tag:blogger.com,1999:blog-35008507146577712232024-03-13T18:46:46.332-03:00Kaitlyn Hatchard (Spinal Muscular Atrophy-Type 1)Hello and welcome. My name is Kaitlyn Anne and I have Spinal Muscular Atrophy Type 1. Children born with SMA 1 gradually lose strength in their nervous systems and die, usually by the age of two. There is no known cure or long-term treatment. SMA not only affects the muscles that help me move, but it also affects those that allow me to breathe, swallow and clear my airway.Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.comBlogger148125tag:blogger.com,1999:blog-3500850714657771223.post-81750362313429734792012-08-21T00:54:00.001-03:002012-08-21T10:47:03.468-03:00Life with TPNI cannot believe we have been home for almost two years with TPN therapy! For those of you who think that your children/family members cannot survive on long term TPN...it's simply not true! My daughter, with all of her diagnoses is still thriving. She is living life and enjoying almost every day. The ONLY reason she is enjoying life is because we are able to be at home on Home TPN! We are very busy now, but I don't think Kaitlyn has ever been so stable :)<br />
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Sure we still have bad days. Kaitlyn is still chronically anaemic. Her doctors have diagnosed her with multifactorial anaemia. This basically means that there are multiple factors which cause Kaitlyn to be chronically anaemic. Some have also called Kaitlyn's anaemia: Anaemia of Chronic Disease. Not sure what to think. We have also, interestingly, found that Kaitlyn has reduced production of the hormone Erythropoietin. EPO (or Erythropoietin) is a hormone responsible for telling bone marrow to produce red blood cells. No wonder she is chronically anaemic! So what can we do about this? We have been replacing the Erythopoietin with a weekly shot. It is a sub-Q shot (subcutaneous injection) that totals 1/2 ml of EPO hormone :( Kaitlyn does not like this needle. Even freezing the site with Emla does not take away all of the burn with the larger volume! We freeze the site with Emla, cool the area with an ice pack for a few minutes, and then use BUZZY the Bee to help with the pain. All of this seems to make it easier for Kaitlyn :) She is such a trooper!<br />
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Our other biggest battle has been with Kaitlyn's Hypercalcaemia! She has been quite ill with this condition from time to time. Anaemia makes her feel bad, but hypercalcaemia makes her feel nauseous and adds to her dismotility issue. She will also start napping through her bad days, which is how we know she is feeling really not herself!<br />
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Kaitlyn's hypercalcaemia is caused by her bones leeching calcium into her blood stream! This is a continuous event! High levels of calcium in the blood stream is NOT normal and like any other electrolyte/vitamin imbalance can be very harmful! Our doctors feel that Kaitlyn's hypercalcaemia is linked to her SMA or lack of mobility. Curious to me that in the HUNDREDS (yes hundreds!!) of SMA families that we know that not another single family is dealing with this issue. I am inclined to believe that Kaitlyn's hypercalcaemia is NOT related to her "original" diagnosis of SMA (Spinal Muscular Atrophy).<br />
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We have been attempting to control Kaitlyn's hypercalcaemia with a biphosphonate. The biphosphonate we have chosen is Pamidronate. Pamidronate is well known in the SMA community as it is typically used to increase bone density. Weak bones are VERY common in SMA and many children with Spinal Muscular Atrophy suffer from dislocated, broken or fractured bones. As weak as Kaitlyn's bones were I am glad to say that her bones to our knowledge were never broken or fractured!<br />
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We have been doing pamidronate infusions for the past year. We did do a bone density scan (dexa scan) at the beginning of the pamidronate infusions. We were scheduled for a scan four weeks ago but the bone density machine was broken. I am not too sure what to expect from pamidronate in terms of bone density. I mean if you were constantly leeching calcium into the blood stream and pamidronate locks the calcium back into the bone....and we are not adding even a normal RDI for calcium....then I do not see how we could possibly be strengthening Kaitlyn's bones! I guess the dexa scan will tell.<br />
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Kaitlyn has also been diagnosed with bronzing. It is a condition where her skin appears to be bronzed, or tanned. Everyone comments on how Kaitlyn has a beautiful tan....like we would take our paralysed daughter out into the sun and let her burn!! URGH!!! Of course not!<br />
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Our next HUGE adventure! A larger van! We have been looking for vans in our price range in Canada for the past few years! Transporting Kaitlyn in our current van with our current ramp system (suitcase ramps 75lbs plus!!) is NOT possible for much longer! We have finally found a van that we are hoping will be perfect! We cannot afford this van, but where there's a will there's a way!!! It will need a couple of modifications to make it safe for Kaitlyn to travel, but when done it will be better than what we have now.<br />
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Thanks for reading folks and I hope to make many more posts in the near furture!<br />
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Some pictures of our new way of life ;)<br />
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Kaitlyn's port....her life-line if you will:<br />
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How the lines are connected...making moving her around even more of a challenge ;)<br />
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Kaitlyn's IV pole is getting a wee bit crowded ;)<br />
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IV meds as her gut simply cannot absorb meds very well anymore.<br />
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It is critically important that we keep everything super clean now!<br />
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Our new way of administering medications.<br />
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A recent pic of our happy girl :) This one was before the bronzing diagnosis.<br />
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This picture was snapped only about a week ago. You can really see the bronzing in this pic.<br />
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<br />Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com0tag:blogger.com,1999:blog-3500850714657771223.post-28256948698888152102011-11-21T15:08:00.000-04:002011-11-21T15:08:04.303-04:00Oh my dear...what has it been?? 6 months..has it really been 6 months since I posted last? A friend of mine says that she keeps checking the blog to read Mother's Day, and is sick of seeing the same post! I guess I better get back to my regular updates! So much has happened in the past six months! <br />
Where did we leave off? Oh yeah..hematology. We had an appointment with hemotology back in the spring and they have diagnosed Kaitlyn with a Multifactorial Anemia. Which is a polite way of saying "we do not know what is causing her anemia" (their own words!). They have also used the term Anemia of Chronic Disease, just another way of saying the same thing really. There seem to be multiple factors involved in causing Kaitlyn's anemia. I had them test Kaitlyn's erythropoietin levels to see if she was making enough of this hormone. Erythropoietin is a hormone produced in the kidneys that tells bone marrow to make more red blood cells. Her levels came back very low normal....but just within normal range. <br />
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I remember questioning the hemotologist at the time and saying since she was low normal would we not start her on a trial of Erythropoietin replacement, and he said no her levels are normal. Two weeks ago when we were in seeing the nephrologist Kaitlyn was once again very anemic and he asked if we had ever had her Erythropoietin levels checked. I told him we had the test done back in the spring and that her levels came back low normal. He checked the records and noticed that she had been anemic at the time that the test was taken. The nephrologist stated that the Erythropoietin levels should have come back high normal or even higher as her body should have been trying to stimulate red cell production. I am a little perturbed that we didn't start the Erythropoietin therapy back in the spring when I questioned the levels. The nephrologist started Kaitlyn on Erythropoietin that very day and we have since had another transfusion. If the hormone replacement therapy works then hopefully Kaitlyn will not need such frequent transfusions. Erythropoietin is the second hormone related to the kidneys that Kaitlyn does not produce in sufficient amounts. More research needs to be done on SMA children and hormone levels! <br />
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Kaitlyn has also started Pamidronate Infusions. Pamidronate is a bi-phosphonate drug that will help Kaitlyn bind the calcium into her bones. It is that drug that will have a twofold effect for Kaitlyn. For one, it will help control her hypercalcemia and it will help increase her bone density. Kaitlyn's serum calcium levels are much more stable now. Her ionized calcium still comes back high, but not near as high as pre Pamidronate. We feel like the drug is working for her. We are currently using a quarter dose of Pamidronate (based on weight) as Kaitlyn had a bad reaction to Pamidronate after the first round. <br />
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In the beginning we gave Kaitlyn a half dose of Pamidronate the first day and a half dose the second day. We wanted to be cautious with Kaitlyn and divide the first dose over two days to avoid Kaitlyn dropping her calcium levels too quickly! But Kaitlyn had her own twist! Kaitlyn developed a secondary Fanconi Syndrome. This is where the kidneys shut down and start to spill glucose and amino acids in the urine! Since we believed the Fanconi Syndrome to be secondary to the Pamidronate all we had to do was wait and see if the condition corrected itself in the absence of the medication. Kaitlyn's body slowly recovered from the Fanconi Syndrome. We waited about eight weeks and then decided to try Pamidronate again at a much lower dose. When Fanconi Syndrome is medication/drug induced then there is a level of the drug that should both produce the desired effect medically without causing the Fanconi Syndrome. We have been giving Kaitlyn a 1/4 dose based on weight since the summer. We do the four hour infusions once a month and so far Kaitlyn has had no issues. We recently went up a smidge on her dose as her calcium levels came back high again. Pamidronate one of the few drugs we have to try and control Kaitlyn's hypercalcemia. <br />
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We have (a month ago) also started Kaitlyn on a VERY weak vivonex solution running into her J-tube. The gastroenterologist has stated that if we can get even 10% of her diet delivered enterally then it would go a LONG way towards protecting her internal organs (including her liver, kidneys) and the lining of her intestine. For those of you familiar with the AA Diet and vivonex specifically; weare mixing 1 tbs (about 1/8 of a package of vivonex) with 240mls of water to make a .2 cal/ml mix. Kaitlyn gets this very dilute formula at a rate of 10cc per hour for almost 24 hours per day. So far Kaitlyn seems to be tolerating this mixture fairly well. She does have more green bile backing up into her stomach,but she is still straight drianage (and likely always will be!). This means that we leave Kaitlyn's G-button open at all times and allow any stomach fluids and bile to drain from her stomach. Since Kaitlyn's stomach is paralysed completely she does not have the ability to even tolerate her own gastric secretions. Her stomach does not contract to pus these fluids down into the intestine to be digested/used in the appropriate way. If we cap off Kaitlyn's G-tube she is gagging within minutes!!! She will vomit if her tube remains blocked for more than a couple of minutes. <br />
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Our hope is that the green bile we see backing up from her small intestine will lighten in time. Before starting the vivonex in her J-tube we were running water at the same rate 10ccs for 24 hours. The drainage at that point was pretty clear, almost all the time. Occasionally there would be a bit of yellowy bile but next to no green ever came out. I'm not sure if we will ever see a lack of green bile while on any sort of stomach feeds. However, she seems to be tolerating the feeds in every other way :) She is not bloated, she does not complain of tummy pain, she is not gagging on a daily basis and her bowels are still working! <br />
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Our latest news is of a more "normal" fashion! Kaitlyn is now requiring the use of glasses to correct her vision. She has astigmatism and is near sighted. Right now her prescription is pretty weak but her opthalmologist wanted her to have glasses in the hopes that it may help her Strabismus. She seems to really like her glasses :) Good thing! She looks pretty cute :) We have altered some ear pillows to accomodate her side lying position. So far we have had zero issues with the glasses. They do not mark her face or head at all! <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-TAgr_0vmYc0/TsqhUpPeMVI/AAAAAAAABAU/WkGBKTrvLR4/s1600/IMG_2346.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://2.bp.blogspot.com/-TAgr_0vmYc0/TsqhUpPeMVI/AAAAAAAABAU/WkGBKTrvLR4/s320/IMG_2346.JPG" width="320" /></a></div>Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com0tag:blogger.com,1999:blog-3500850714657771223.post-70844328863705063432011-05-09T00:23:00.000-03:002011-05-09T00:23:50.439-03:00Happy Mother's DayWow, I cannot believe it has been several weeks since I posted. We have another transfusion under our belts. Kaitlyn's hemoglobin got as low as 65 this time in a little less than five weeks :( I think it's time for a referral to hemotology on this issue! <br />
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We are also meeting with our Nephrologist this Wednesday to see what we can do about Kaitlyn's hypercalcemia. There are ways to treat hypercalcemia if the cause is identified. Our nephrologist believes that Kaitlyn is probably leching calcium from her bones. This concerns my husband and I a great deal!! Kaitlyn is already osteopaenic. Her bones are brittle and she has now been leeching calcium from them for the past almost six months!!!! We have had bone density scans done for the past three years. Kaitlyn was due for more scans this past January! Our doctors felt that the scans wouldn't be much help? I'm not sure I agree :( I feel that we would have a fairly good comparison from the past three scans. Perhaps it would give us some insight as to the extent of bone degredation (if any) to the calcium being slowly removed from her bones! If she is leeching calcium from her bones then there are ways to prevent this from continuing! <br />
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One way is to treat Kaitlyn with bi-phosphonates. One such drug is called Pamidronate which is used by several SMA children for brittle bones. It helps keep calcium in the bones. Currently we are adding ZERO calcium to Kaitlyn's diet!! This concerns me greatly as calcium is good for more than just bones! Our doctors have increased Kaitlyn's sodium and fluid intake trying to get her to "pee" off the excess calcium in her blood. So far this has been working, but it is only a band-aid! I do not believe that she has an indefinite supply of calcium and I also do not want to wait until we break one of her bones before we treat the problem!<br />
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We had a rough week two weeks ago. Kaitlyn's J-tube blocked when I was giving her afternoon meds! This happened on Monday afternoon. We couldn't take Kaitlyn in until Monday evening. By then, being Easter Monday, there was nobody around who knew what to do with Kaitlyn. They admitted us so that we could see our surgeon early Tuesday morning. By admitting us they could also administer some IV fluids/meds to replace the fluids Kaitlyn would be missing from her J-tube. Kaitlyn gets about 300cc's per day through her J-tube. Not to mention medications.<br />
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Anyway, my story....Tuesday morning arrives and our surgeon comes to tell us the bad news. We haven't a replacement tube in the hospital. Kaitlyn has a GJ Mickey Button. To my knowledge she is the ONLY child using this tube in our children's hospital. Our surgeon had to order TWO new tubes from the States. He had surgery time tentatively booked on Thursday. Rather than discharge us from the hospital, they sent us home on a pass so that we had the IV fluids we needed and IV medications. We went back to the hospital on Thursday in the morning. We were scheduled for afternoon surgery. Our surgeon came up in the afternoon to tell us that the J-tube hadn't arrived, it was stuck in customs at the airport :( We decided to stay overnight and Kaitlyn would have her surgery Friday morning. Kaitlyn had her surgery and everything went well. She lost another tooth when the anesthetist intubated her :( She is now missing both her two front teeth.<br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">This weekend has been quiet. We went "shopping" Saturday. Shopping is in quotations because first you have to have money to shop! LOL Owen needed a new pair of rubber boots and the family wanted to get me a movie I've been wanting for Mother's Day. The kids each picked a toy as well...nothing big. Well, Kaitlyn did spy an Ernie that she NEEDED!!! She said "need Ernie...need Ernie"!! How can we refuse when she asks so sweet!! I hope everyone had a pleasant Mother's Day!! </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div><div class="separator" style="clear: both; text-align: center;">Kaitlyn having a cuddle with Mama! She doesn't exactly fit in my lap anymore!!</div><br />
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</div><div class="separator" style="clear: both; text-align: center;">Owen holding his Freckle Face plant! He picked it out and has been doing EVERYTHING with it since we brought it home! He even took it to watch him have a bath and ate with it at the dinner table :P </div><br />
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</div><div class="separator" style="clear: both; text-align: center;">My WILDMAN!!! Kaitlyn's twin Alexander :) </div><br />
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</div>Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com0tag:blogger.com,1999:blog-3500850714657771223.post-26641111323541338072011-03-24T09:27:00.001-03:002011-03-24T09:27:53.033-03:00HypercalcemiaLast week Kaitlyn had another blood transfusion. She had blood work done on the Tuesday and her hemoglobin was 71! We went in on Wednesday for a very long day in house. They couldn't admit Kaitlyn as our hospital is very short on rooms right now and is full of RSV! We do NOT want to be anywhere near that stuff. We were given our own room and our own nurse (thanks Linda!!) in the Medical Day Unit. Because it was a Wednesday we also got to see Kaitlyn's pediatrician who does rounds in our hospital! It was so good of her to see us!! She arranged for us to meet with a nephrologist to try and get this hypercalcemia under control. <br />
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The nephrologists believe that Kaitlyn may be leeching calcium out of her bones. This can happen when individuals are immobile for entended periods. Right now their main concern is her hypercalcemia! Her serum calcium is at critical levels (3.19) and they have been trying to bring the calcium down slowly. Kaitlyn has been started on additional sodium both in her TPN and in her J-tube. They are also adding additional water to her TPN. Their goal with the sodium is to get Kaitlyn to excrete more calcium in her urine by increasing her total urine output. In almost one week of this treatment Kaitlyn's total serum calcium has dropped a smidge (although she also had a blood transfusion), so they are treating more aggressively this week with more sodium to try and bring the calcium down into a normal range. Once this is accomplished then they will deal with the cause of the hypercalcemia. <br />
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If her hypercalcemia is due to leeching calcium out of her bones, then they can treat that by the addition of biphosphonates (ie. pamidronate). In the meantime we will just have to watch her close. I have no idea how weak her bones are at this point, but calcium leeching out of her already weak bones kind of scares me! Biphosphonates kind of scare me too because of their side effects. Luckily we know several SMA Type 1 children who have already had these transfusions (pamidronate) so we will lean on them when the time comes ;) <br />
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In less than two weeks Kaitlyn's hemoglobin is already below normal values. Her hemoglobin was 104 yesterday. Normal values are 115-145. I cannot wait to get these acute issues dealt with and see if we can't get her a little more stable! Perhaps then her hemoglobin won't drop so fast! She doesn't feel herself when the hemoglobin drops too low :( <br />
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Some recent shots of the kids! Sorry I haven't posted any in so long :( <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://lh4.googleusercontent.com/-3zZCUthEu1k/TYs4a5YZK5I/AAAAAAAAA_M/6C1q4w956qw/s1600/IMG_1917.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" r6="true" src="https://lh4.googleusercontent.com/-3zZCUthEu1k/TYs4a5YZK5I/AAAAAAAAA_M/6C1q4w956qw/s320/IMG_1917.JPG" width="320" /></a></div>Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com3tag:blogger.com,1999:blog-3500850714657771223.post-76570186607583786402011-03-14T00:05:00.000-03:002011-03-14T00:05:08.623-03:00Kaitlyn is such a Chatty Cathy!!!From the time that Kaitlyn was an infant people have been telling us that it is highly unlikely that she would ever speak. Speech is incredibly difficult for an SMA Type 1 child. They have neither the lung strength nor the articulation to make speech. Against all odds our girl has begun her journey with words!! She has had a few simple words since she was about ten months old. For three years now we thought that the few amazing words she could belt out were all that she would ever have. Well since coming home from the hospital in December our girl has developed an incredible desire to speak!! She "talks" almost non-stop now! She is still not talking in full sentences, but her enunciation and vocabulary have definitely grown :) <br />
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I never thought that I would see the day that my daughter would be able to tell me verbally how to help her! She has been verbally asking for coughs and/or physio for a while now. The other day she was fussing and fussing. I changed her diaper, smoothed her clothing (checked for uncomfortable wrinkles), readjusted her position and nothing seemed to help. I think I even took her temperature! (Force of habit :P) I got a little frustrated that everything I did wasn't helping! I finally asked her "Kaitlyn what is wrong?" Kaitlyn said, "Ishy (itchy)". Me, "Itchy what?" Kaitlyn, "Itchy head!!!" So I told her to stop crying that I would scratch her head and I did. I couldn't help but be a little speechless, amazed, and a little overwhelmed!!! My girl just communicated something to me in a WAY that I never thought would EVER be possible. As I'm scratching and wondering when I should stop....She says, "that's better!!!" The first thing I did was chuckle and shake my head in wonder and then ran for my cell phone to tell Tim :) <br />
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The other night Tim was lifting Kaitlyn's upper body off the bed in a big bear hug. He kind of squeezed her and gently rocked her from side to side. Kaitlyn says "easy" then "too rough!!" LOL We both looked at each other and just laughed. Daddy said, "Sorry Kaitlyn"!! His hug certainly didn't look rough to me, but we are both so thankful that she is finally able to communicate with us even in these simple ways!!!<br />
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Kaitlyn has been dealing with anemia. Two weeks ago her hemoglobin was 88 down from 116 two weeks before that! Normal hemoglobin is 115-145 g/L. She has bloodwork again this Tuesday and will likely need another transfusion. She seems to need a transfusion about every six weeks. I want to add that Kaitlyn is not iron deficient. Her serum ferritin is 1368.1! Normal values are 12-120 ng/mL. Serum Ferritin can also be elevated from inflammation within the body. <br />
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On top of the anemia Kaitlyn has been dealing with back to back urinary tract infections. Six weeks ago we had to learn how to catheterize Kaitlyn to help empty her bladder. She was going 12+ hours consistently without urinating! We cathed her once in the hospital and got 540 mLs!!! Kaitlyn has had urine retention for several months, but it has only been the past few weeks that she has had difficulty urinating "enough" on her own. She always seemed to urinate well, but NEVER completely emptied her bladder. Now she is having difficulty some days urinating at all. Urine catheters were ordered for every eight hours. We have been placing the catheters every day. Since beginning the catheters we have had back to back UTI's. Last week we started an antibiotic for UTI number three. Friday, Kaitlyn's urine really started to stink. An aweful sulphur smell (rotten eggs). I didn't know what to think. Well last night when I cathed her there was a LOT of sediment in her urine. When I dipped the urine there was a high level of blood in the sample. This is after five days of antibiotics. The bacteria was sensitive to the antibiotic Kaitlyn was taking. We can only assume she has managed to grow a new bacterium resistant to the antibiotic we were using. We started a new antibiotic today and are keeping our fingers crossed that when the sensitivities come back that we are NOT going to need IV antibiotics! The lab said this sample was almost pure puss :( <br />
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The third issue we have been having is with elevated serum calcium. Both the ionized calcium and total calcium values are elevated! I have no idea what this means! Her phosphate levels have been normal so our doctors do not think the hypercalcemia is due to the parathyroid. They think her issue is kidney related, but I'm not sure in what way! Our paediatrician is going to consult Kaitlyn's renal doctor who follows her for her high blood pressure. Hopefully he will have some suggestions. Tests we can do, or some sort of treatment! We have taken out ALL oral calcium and Vitamin D3 supplementation ordered by endocrinology. They wanted her to have 800 mg of elemental calcium in addition to the calcium in her TPN. The calcium in her TPN was below normal levels for a typical TPN order. They have also taken that reduced calcium down by an additional 20%. They have been trying to lower her serum calcium, but alas the serum calcium continues to rise! Her total serum calcium was 3.19mmol/L two weeks ago. Normal values are 2.1-2.7 mmol/L. I sure hope they figure this one out soon as her ionized calcium has been high since we were dicharged back in December! <br />
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Kaitlyn has routine blood work this Tuesday and will likely need to be admitted to hospital for another transfusion. Our hospital is reportedly full of RSV!! We will NOT have to go through ER or admissions! Our doctors always triage Kaitlyn right from the comfort of her hospital room! They are also great at isolating Kaitlyn from the nasty bugs and we never share a nurse that has an isolated kid! <br />
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Please keep Kaitlyn in your thoughts as we try to figure out what is going on inside her little body!Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com0tag:blogger.com,1999:blog-3500850714657771223.post-49964686981426615492011-01-07T21:41:00.002-04:002011-01-28T09:35:43.580-04:00Home for Christmas 2010!Oh my Dear!!! It has been FOREVER since I posted! Sorry! We have been a little..err...busy :) We got home December the 17th! Just in time for Christmas! Thanks to some very special people making some holiday magic we had an AWESOME Christmas!!! With one week left until Christmas, Tim and I had no time for shopping :( We cannot begin to thank those involved for all of the help they gave to our family!! I do not even know WHO to thank for some of the gifts we received! All we can say is that our family had the best Christmas ever, and thank you to everyone that helped make our day so special. <br />
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So what happened?? I know I for one am still struggling for answers! Why did Kaitlyn's stomach stop working? Why is her small bowel also not functioning properly? Why was her potassium dropping dangerously low when we were trialling feeds? Why did she require TWO blood transfusions while we were trialling feeds? I could handle the respiratory stuff , but this metabolic/blood/digestive issues are WAY over my head to understand! I have spent countless hours on the internet searching, reading and learning trying to understand what is happening to our daughter. Looking for answers or a solution to her troubles! <br />
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So far Home TPN has been fairly "easy". We have to be super careful to keep everything clean! Aseptic techniques and sterile feilds are not hard, you just have to follow the rules EVERY TIME! The time it takes to set up IV feeds is actually less than anything we ever did for enteral feeds!! Crazy but true! The hard part of IV feeds is getting some of the supplies we need covered!! We have an insane medical system that pays for everything our child needs when she is hospitalized, but when we want to bring her home those same supplies are not covered!?!?! Some of the medications we have Kaitlyn on work better for her when given through her IV! But those medications are expensive and are not covered when we bring our daughter home. We found aid through Palliative Care from our local Children's Hospital to pay for our IV meds. But this doesn't cover the cost o some of the supplies we need to deliver these meds. This is NO fault of the Palliative service!!! We are extremely greatful for the help they have offered freely to our family! The cost of the supplies AND meds we need, I feel, should be covered. We are doing the "system" a favour by keeping our daughter in our own home. We save the government thousands of dollars per DAY by having Kaitlyn at home! You'd think the least they could do is cover meds and supplies needed to keep her at home! OK that's my rant for the day ;) <br />
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We are doing well since coming home. Everyone has adjusted to the new routine really well. Tim is still able to get out to the firehall training sessions every week. The boys are happy and Kaitlyn is thrilled to be home! She thrives in her home setting! She has discovered some new words and is coming out with more every week. She still does not communicate in sentences, but her vocabulary is growing and her responses are becoming more predictable. We have been able to discover that she knows most of her colors, now that she is actually saying the words :) We use a lot of eye gaze to find out what Kaitlyn knows, but unfortunately with eye gaze if she doesn't cooperate then the activity is useless :) <br />
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We have had some troublesome blood labs since coming home. Some of Kaitlyn's bi-weekly blood-work has been a little off. Her GI doctors and her pediatrician have been on top of it though and we are hopeful that the changes they have made will help. The other issue unrelated to TPN is that Kaitlyn is anemic again. She is not iron deficient though, so we are not too sure what is going on. <br />
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Hopefully next week's blood labs will look better so we can get our girl stabilized and keep her home for a VERY long time :)Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com2tag:blogger.com,1999:blog-3500850714657771223.post-87144719277976313202010-11-21T08:46:00.000-04:002010-11-21T08:46:05.066-04:00Feeding Intolerance or Bacterial Overgrowth in the Small Bowel ???So for the past week we have been entertaining the idea that Kaitlyn may have a bacterial overgrowth of the small intestine. It might explain the bloating that we have had, the gas and intolerance in feeds! However, I don't think it explains the gastroparesis and duodenal paralysis, the low to no bowel sounds and the fact that she still has barium throughout her intestine two weeks after surgery!! Our surgeon thinks the bacterial overgrowth may be what's causing the feeding intolerance. He has consulted GI and they have decided that they will treat Kaitlyn for bacterial overgrowth, as there is no way to really accurately test for bacterial overgrowth. The best way to tell if bacteria is causing her feeding intolerance is to treat for bacterial overgrowth and then try to feed her again. GI has recommended an antibiotic to be given through Kaitlyn's J-tube (treat the infection directly!) and has placed her back on Cisapride (motility med.)! <br />
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We were also having issues with low grade fevers and off and on fevers! We cultured EVERYTHING!! All cultures came back negative....except low growth yeast from her throat! (Guess that might explain the THICK white quarter sized plugs we have been pulling out on the end of our 12Fr catheters!!! YUCK!! Kaitlyn had a few days before we started treating for bacterial overgrowth that she was feeling miserable. She was not sleeping, she had the fevers, she was whining almost continuously, and sometimes was even crying!! We couldn't find anything wrong. In the meantime we kept watching her haemoglobin levels get worse and worse! She was really anemic!! We decided to do a transfusion of packed red cells! About half way through the transfusion Kaitlyn stopped whining and went to bed really well (she actually went to SLEEP)!! Then the next thing we notice is her fever is gone...and doesn't return!! The next day she was acting like normal Kaitlyn again (just a little tired from missing so much sleep the past few days)! <br />
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Because of the fevers and the no sleeping and crying Infectious Disease ordered a CT scan to rule out any inflammation/infection in the small bowel or other organs that we have been unable to see with other diagnostic imaging. The CT scan was clear, but did show us that both hips are dislocated. This is quite common with SMA, particularly the weaker children/adults. No intervetion is typically needed as there is just no muscle there to support the joint! We did have proper x-rays done of her hips to document the bones as they are right now! <br />
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Here's the journal of our past week:<br />
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November 16<br />
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What a rough couple of days! Kaitlyn has been unable to rest...and I mean NO restful sleep for almost three days! She has been crying a LOT, fussy and just NOT herself. Her hemoglobin finally dropped to 68 and our pediatrician called it....she's not making enough new blood! We had to give her a transfusion of red blood last night. What a difference it made in her sleep. She went to bed around 10pm and is still sleeping now at 8am!! I got my Kaitlyn back :) She is now exhibiting some discomfort when we touch her belly and x-rays are clear, ultrasounds are clear, all cultures sent are clear and her tummy is still soft!!! Today we are having a CT scan to rule out anything minute we might be missing!!! I almost hope they find something (something fixable!!!!!!). This "not knowing" what's going on, not understanding why she is not tolerating any feeds is driving me NUTS!! We are also working towards getting the paperwork started for home TPN!! This process apparently is supposed to take several months!!! Owen's Birthday was on Sunday! My big guy is 6 years old now :) He is the bestest of all big brothers and we are so proud of him!!!<br />
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November 18<br />
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Kaitlyn is a different kid since her blood transfusion two nights ago!! The fussies have stopped, the fevers have stopped, the really high blood pressures have stopped and blood pressure is stabilizing!! Her HR has gone down 30 bpm and she is sleeping peacefully through the night again :) CT scan was clear...no abnormalities. Heamoglobin is up to 117 from 68! Kaitlyn is chronically anemic, we almost never see normal haemoglobin values :) <br />
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GI has decided to put Kaitlyn back on Cisapride and begin treating with antifungals/antibiotics for a possible bacterial overgrowth in her small bowel! This is our last effort to get her gut working. In the meantime we have started the process to get home TPN!! Apparently the longest part of the process to get home is the training involved to teach the families how to run the TPN at home!!! Can you see me rolling my eyes folks!!!!! If Kaitlyn's issue is bacterial overgrowth it might not look so good for enteral feeds...but we will be giving it our best shot!<br />
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November 19<br />
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Kaitlyn was in such a good mood today :) Laughing and playing her funny little games! She had her nurse in stitches..hehehe. Update: Hypertension diagnosis is official! Renin levels came back twice the normal values!! We have doubled her dose of Blood Pressure med and her BP seems to have stabilized over the past couple of days. She will remain on BP meds for the rest of her life. CT scan showed dislocated hips :( We knew the left was out. They do not seem to be causing her any discomfort on a regular basis at this time! <br />
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We have started an antibiotic through her J tube to fight the possible bacterial overgrowth! We have also restarted the Cisapride (motility med.) for what GI calls the "what can it hurt....and if it helps even 10%"!! We are giving this stomach one last chance and we are putting everything we've got into it!! She is on half vivonex/half pedialyte mix and is running at 10cc per hour. So far she is looking pretty good! We are definitely getting more by way of residuals, but they are clear (for the most part) and only slightly tinted yellow/green!! Do I dare to say that the belly might actually look a wee bit less distended tonight?? SHHHHH...don't tell her I said that!!! <br />
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TPN....UGH....TPN! What a HUGE hassle!!! There is a special TPN board in which a handful of people sit in specialized positions?? One of the main decision makers for the home TPN process is away on sabbatical until January! The nurse specialist (also highly important for the home TPN process) is away on vacation!!! She won't be available for a meeting to even discuss the option of Home TPN until Decemeber 8!!! So if the belly doesn't work, then we are stuck here until after the 8th of December! We are doing everything else we can in the meantime! We will be trained on how to run TPN at home. We will be practising accessing Kaitlyn's port and disconnecting and connecting lines! We have done everything already that we need to know except for the changing of the actual needle in her port!!Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com2tag:blogger.com,1999:blog-3500850714657771223.post-61901444723931729512010-11-13T23:38:00.017-04:002010-11-21T08:05:28.577-04:00G-J Tube SurgeryKaitlyn had her G-J tube surgery Nov. 3. She had to be intubated as the surgeon had to place a scope to help him guide the new tube into place. She had to have her G-tube stoma stretched to take a larger G-J tube. Our surgeon then placed the J-tube and advanced the tube well into the small bowel. Everything went so smoothly! The biggest hitch about the surgery itself was that the anesthetist knocked out one of her front teeth :( They took Kaitlyn to PICU after surgery for recovery. This way Tim and I have access to her immediately after surgery....and she is where she needs to be in case of complications. But, like a trooper, she pulled through surgery yet again with flying colors and extubated to her own vent as soon as they were happy with the placement of the J-tube and that there were no perforations, etc. She did so well we were back up to our room in PMU two hours after she was extubated!!<br />
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Other than being in a little discomfort from all the air they pumped her full doing the surgery, Kaitlyn's surgical recovery was quick! She was pretty much recovered by the third day post surgery. We started pedialyte at 5 mls per hour through her J-tube and ran that for 24 hours. The next day we tried half pedialyte/half double diluted vivonex and ran that mix at a rate of 5 mls per hour. She seemed to tolerate both the formula mix and the rate really well. We then worked her up to a rate of 15mls per hour and that's when her tummy started to bloat a bit. We held the rate at 15mls for a good 18 hours. We then slowly worked her up to 25mls per hour and that's when we started seeing some bigger residuals coming back in her tummy. We have even seen some creamy residuals very reminiscent of formula backing up into the stomach!!<br />
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Since our admission to hospital Kaitlyn has also been diagnosed with high blood pressure and is now on medication for hypertension. We have to check her blood pressure several times a day and dose her with a hypertensive med. if her BP gets too high! She has had pressures as high as 140/100 and continuously over 120/90 until we started blood pressure meds. We have been treating her for high blood pressure anytime her systolic pressure is over 120 up to every six hours. The doctors believe that Kaitlyn has hypertension because she is a chronically vented kid. Chronically ventilated kids can sometimes have hormonal imbalances and in Kaitlyn's case this seems to be true. We are awaiting some test results that should confirm our doctor's suspicions.<br />
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Here's a bit of a journal of the past few days: <br />
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November 3<br />
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Surgery was a little late today. Kaitlyn did great. Hopefully when we begin feeds in a couple of days the formula will flow in the right direction! She has some discomfort tonight, but overall not too bad. Her tummy is still pretty swollen. They knocked out one of her front teeth intubating her....so her mouth is also a little sore!! Poor girl...and she had such a beautiful smile :(<br />
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November 6<br />
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<span class="UIStory_Message">Kaitlyn has fully recovered from surgery. We started feeds yesterday. Pedialyte running at 5mls per hour. Today we are running half pedialyte/half dd vivonex, also starting at 5 mls per hour. The directions from surgery are to go up by five every four hours! I think Tim and I may decide to up feeds a little more slowly<span class="text_exposed_hide">...</span><span class="text_exposed_show"> :) So far she seems to be tolerating the rate! Kaitlyn is still having issues with high blood pressure! She is now having to go on meds for hypertension.</span></span><br />
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<span class="UIStory_Message"><span class="text_exposed_show">November 8</span></span><br />
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<span class="UIStory_Message"><span class="text_exposed_show">We have started feeds. We have made it to 25 mls/hour of half vivonex-half pedialyte. But there is a lot of residual in her tummy! Not too sure if this is just "normal" for Kaitlyn, but it seems to me that we could run into problems if we are constantly dumping residuals from her tummy!! Perhaps we are just too anxious... to get home. Kaitlyn's tummy is nice and soft with each new increase, but her tummy is definitely bloated, compaired to her normal! She is not fussy, but she is flushing a lot the past few days. However, she is also on a number of new meds :/ Hopefully everything will sort itself out as we continue feeds!</span></span><span class="UIStory_Message"><span class="text_exposed_show"></span></span><br />
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November 13<br />
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Got to see our surgeon in a tuxedo tonight!!! I have no idea what function he was called out to to come consult our daughter....but THAT's dedication and true caring!! Kaitlyn is once again on full TPN! Yesterday and today she has been running a fever and ALL cultures are negative!! We cannot find infection anywhere...no reason for the fever! We did an x-ray of her abdomin this morning and her J-tube is in the right place, there is no abno...rmality to be found. However, since placing the j-tube we have been having a lot of bile back up into the stomach. When I say bile I do not mean lightly tinted greenish yellow secretions!!!! I mean thick dark brown-green, sometimes greenish-yellow, and sometimes VERY suspicious of creamy formula-like appearance!! <br />
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Yesterday and through last night Kaitlyn was getting more and more aggitated. She has not been sleeping well the past three days! Yesterday she was awake at 5:30 am, had a half hour nap in the afternoon and then stayed awake until 9:30pm! She then woke up at 12:00am until 2:00am and then woke up for the day at 6:00am!!! She was miserable ALL day today. She fussed and whimpered and even cried tears until this afternoon when she FINALLY had a three hour nap. We turned her feeds off at 9:00am this morning and they have been off since. Her tummy is quite distended and sore to the touch. Our surgeon is now thinking that she may have a bacterial overgrowth in her small bowel causing the bloating and discomfort. He wants to consult GI tomorrow and see what they think. The only other thing he is thinking is that this could just be an intolerance to gut feeds. Want to hear something crazy??? Kaitlyn's bowel still has barium dye in there from ten days ago when we had surgery!!Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com1tag:blogger.com,1999:blog-3500850714657771223.post-5266635001885685012010-11-02T07:34:00.002-03:002010-11-21T07:50:21.759-04:00Bacteremia X 2 and GJ SurgeryOh my dear! I didn't realize how long it has been since our last post! You guys must be bursting for news! I have been answering e-mails for those impatient for updates ;) Are we still in hospital you ask?? Yes, we are still here, with no discharge in sight yet! Kaitlyn is still on full TPN and is still NPO (nothing by mouth...or in Kaitlyn's case nothing going into her stomach!) not even oral meds! She has also not been getting even pedialyte through her tube, even though we know she can tolerate very small rates, as she does not need the extra fluids right now. Kaitlyn is getting over her second bout with bacteremia! We stopped the meds for the first round of bacteremia (infection in the blood) and we were waiting 48 hours to repeat the blood culture to make sure that we got all of the infection! Kaitlyn didn't even make it to 36 hours before spiking a fever and getting really sick agian! Bacteremia is NO fun! It slams one hard, especially one as weak as Kaitlyn. <br />
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SO besides the second bacteremia what's been going on....we left off with Kaitlyn needing an NJ tube placed....<br />
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Here's a bit of a journal from the past week and a half:<br />
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October 20<br />
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Soooooo....we sent down a requisition today for Radiology to place an NJ tube in Kaitlyn and the radiologist sent up a refusal post hast!!!! The radiologist on duty currently is the radiologist that perforated Kaitlyn's bowel almost two years ago exactly! He is outright refusing to place an NJ tube in Kaitlyn even thou...gh our surgeon has recommended the proceedure! The radiologist thinks she is at too high a risk of erosion or perforation of the bowel!! The poor guy is scarred for life because of what happened with Kaitlyn :( Our surgeon is on vacation until Monday, so I guess we will form Plan C at that point! Oh well, it gives us the weekend to go up on Kaitlyn's feeds very slowly and see if she can feed through her tummy! <span data-jsid="text">She's on IV Pantoprazole and IV Odansetron. </span><br />
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<span data-jsid="text">October 22</span> <br />
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<span data-jsid="text">A full week on Cisapride.....and where are we... We are able to run pedialyte at 20 mls with zero residuals!! At 20 mls per hour of pedialyte plus her maintenance in TPN she was getting REALLY drooly. We decided to give her some formula yesterday. We double diluted some vivonex and mixed that half-and-half with pedialyte. This makes a 0.2 cal/ml solution!! We turned her rate back to 10mls per hour thinking she would have a harder time digesting the food versus pedialyte.....and her g...ut shut down again!!! UGH!! We had to leave her pump turned off all night last night. This morning we started our day with a fresh batch of half-n-half and started her rate at 2mls per hour. we upped her rate every couple of hours to 6mls per hour. Then we left her at 6mls for three or four hours, and then upped her to 8mls and she stopped digesting. This time there was a lot of green bile coming back. It seems like the Cisapride has worked to increase motility, but whether or not she will ever be able to tolerate rates sufficient to feed???? We have officially been at this for a month now!! We are ready to go home! </span><span data-jsid="text"> </span><br />
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Placing the NJ to test the lower bowel would be our preference (and truely the request of our surgeon). However, we will have to speak to our surgeon on Monday and re-evaluate our plan. He may be willing to place the J tube without the NJ. We just need to get home and are trying to work the best possible outcome for Kaitlyn at the same time. <br />
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October 24 <br />
<br />
Fourth day on half double-diluted formula and half pedialyte. We have been able to work Kaitlyn up to a rate of 7mls per hour. Every time we increase her rate to 8 mls per hour she backs up! Our surgeon and pediatrician will be back tomorrow. We will have to devise Plan C. In the meantime we have been dealing with a nasty thrush outbreak :( Kaitlyn's poor little mouth and throat are full of it! I have been suctioning a lot of thick white goop out of her throat! Poor girl has been asking for more vent time too.......no wonder! We have been using nystatin for the past three days and she is finally seeming a bit better today. Boy was she uncomfortable the past two days!! We have restarted her acidophillus today as her tummy is also bloated. It has been a month since she's had anything in her gut to digest! Now she is on her second round of IV antibiotics and her gut is probably stipped of any beneficial bacteria :( Hopefully the acidophillus will help if she can tolerate the additional fluid. Right now she is getting her acidophillus and her Cisapride orally and all other meds are being done IV! We are trying to give her gut the best chance we can!!! Just so ya's know....Enoxaparin injections SUCK!!! I will try to rememberto take some pictures of Kaitlyn's poor little legs when she wakes up from her nap. They are all bruised and ugly looking :( On the bright side....her port now all of a sudden gives blood back!!! It has been suggested that we have the Enoxaparin to thank for dissolving clots/fibrin from around the port allowing blood return :) This is very good news as it only took a few days for the blood to return. This could be an easy treatment for future clots/fibrin in her port!! <br />
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October 27 <br />
<br />
Kaitlyn's stomach has been completely shut down for the past two days :( She got a little distended and uncomfortable and then her tummy just decided to shut down again. For the past two days green/yellow bile has been accumulating in her tummy and she has gaggy spells that force us to aspirate her tummy and toss the bile!!! (AKA vomitting!!!). I know this story sounds all too familiar to some of you :( So what upset me today.....Our surgeon comes by today and I tell him our concerns about the bile/discomfort and intolerance to feeds. I told him we were frustrated about the green in her stomach (as it should NOT be there!!!!) and was wondering if there was another study or something we should be doing to figure out why her stomach keeps shutting down??? He said he wanted to do an upper GI with barium to see if there was any bowel blockage/adhesion (from scar tissue) or any other "reason" why food might not make it through the gut! I reminded him of the dye test that we had already done and he said that he would review that study as well as our x-rays to determine if there was ANYTHING they could attribute to blockage (partial or otherwise!). <br />
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<br />
Our surgeon comes back and tells us that he has reviewed our dye test and x-rays as well as talked to collegues and radiologists about Kaitlyn's condition. They seem to feel that because she is older now and more "robust"(????) and because they didn't see ANY scar tissue/adhesions/blockages to be concerned about they feel that she could tolerate having another GJ tube being placed. He is really concerned about putting her through another surgery, especially one that would be such high risk. I totally see his point....but on the other hand I am confused as to why he was so against having us place another GJ tube and now thinks that it is the lesser risk??? I hope he comes by tomorrow and explains everything to us!! It kind of makes me a little mad to be honest! If he had reviewed all the tests and done some consults before we discussed surgery in the beginning we could have placed a GJ tube by now and been closer to getting home!! He has also tentatively reserved surgery for Monday morning in case we need it!<br />
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We stopped the Vancomycin today for the blood infection. 48-72 hours should be enough to tell if the infection will come back. Let's hope this is the LAST blood infection we ever have!! She was pretty sick! After 48 hours we will repeat the blood cultures to make sure the infection is completely gone! <br />
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The only other thing going on the past two days has been a high blood pressure. We have had readings like 135/84, 124/88, 135/102, 140-102, 140-88 (normal blood pressure for a child Kaitlyn's age/height 92/52).....I guess I'm wondering if anyone else has seen this??? During these blood pressures Kaitlyn has been completely comfortable...either sleeping through the entire reading or awake and happy to talk to the "visiting" nurse :)<br />
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HR has been back to normal tonight and sats are perfect!! I hope this means tomorrow will be a better day for my girl :) Another interesting point....Kaitlyn had a routine needle change in her port today and the "fluke" blood return is still there!!! It appears as though the Enoxaparin injections have given us back our blood return in our port when two rounds of the TPA didn't work!!! :) I am happy as it is an easy thing for us to try the next time that Kaitlyn's port fails blood return!<br />
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October 29 <br />
<br />
ID doctors believe that the offending bacteria is in her line. There is not much hope to save this line. However, Kaitlyn has been rendered inaccessable for PICC lines and we have already had tw<span class="text_exposed_hide">...</span><span class="text_exposed_show">o cut downs in her left arm. Both legs have been ruined by past blood clots, resulting in too many collaterals for line placement. We have only her right arm left for venous blood draws and emergency IV lines!! We are saving the jugulars for new lines! Right now we are waiting for Monday to place a GJ tube. We are hoping to get Kaitlyn up and running with the GJ as right now her only source of nutrition is TPN. Once she is on full feeds, then she will have had a good run on IV antibiotics. When we are able to stop the TPN it will make it much less likely that the bacteria will return to the blood. If it doesn't come back then we will leave the port and pray that the infection doesn't return if it's not being fed (with the TPN). If we stop the IV antibiotic and the infection returns then we will remove the port and place another when the time is right...ASAP.</span> <br />
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<span class="text_exposed_show">November 1</span> <br />
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<span class="text_exposed_show">No surgery today :( Our doctors forgot to hold the enoxaparin (Blood "thinner"). It needs to be held for 24 hours before surgery! Also Kaitlyn's pre-op blood work came back with haemoglobin of 75! Normal haemoglobin is 115-145. She would have had a blood transfusion before surgery. Lets hope the sample was just diluted with the extra fluids she has been getting. We have tentative surgery now for Wed. </span><span class="text_exposed_show"></span><br />
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Well that pretty much catches us up to date for now! Will try to do another post in a few days.Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com0tag:blogger.com,1999:blog-3500850714657771223.post-2278391477755721202010-10-20T01:54:00.002-03:002010-10-20T08:24:40.059-03:00Gastroparesis and Bacteremia!!!What's been going on you ask??? Well, we have been battling to get home. Slogging through the many obstacles that keep jumping in our path! First Kaitlyn's tummy slowed considerably. Then it stopped altogether. Then we ended up in hospital. Then Kaitlyn got pneumonia (likely from aspiration--due to feeds backing up in her stomach, causing emesis). Then we started a motility med. Then she got bacteremia (blood infection--likely from her port!). Then we retrialled the motility med.!!! Had to start subcutaneous enoxaparain injections. See what I mean!! Crazy! Who would have thought that one little tummy could cause such horrific trouble :( <br />
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I think the worst part of being in hospital (besides fearing what will happen to Kaitlyn) is not being with our boys! It sucks not being able to be in two places at once. I have seen very little of my boys over the past month! They keep asking when we are coming home :( If it weren't for Grandparents we could not do this!!! Tim's dad has been up with our boys from the beginning and he will never know how much we appreciate his help! All the grandparents have had their turns taking care of Owen and Alex. Our boys are lucky to have grandparents that are willing and able to care for them when Tim and I are trying to balance always having one of us at the hospital, Tim's work, and each of us trying to spend precious moments with our boys. We cannot thank the grandparents enough, especially Grampy, for helping us to care for our boys!!! You are making it possible for Tim and I to focus on getting Kaitlyn healthy and back home where we all belong. Without you we could not make the important daily decisions that we are being asked to make, decisions that could seriously affect the outcome of this hospitalisation for Kaitlyn. Thank You!! <br />
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Here's a bit of a journal of our past few days. This should bring everyone up to speed that I am not in contact with on a daily basis! For those of you sending notes and e-mails...we appreciate your support, prayers, thoughts, suggestions and concerns for our daughter. I don't know what we would do without our friends and our SMA extended family! <br />
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October 12<br />
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Increase in feeds.....FAIL! Kaitlyn did really well on feeds yesterday only to stop tolerating the same rate overnight. She backed up 40mls in her belly through the night and had some coughing/gagging fits :( We drained off the 40mls for fear she would have a huge vomit. The color of the fluid was mossy green....bile! This should not be in the stomach. We turned her feeds off and this morning I drained off another 35 mls (also green) that had accumulated :( Stomach feeds have been discontinued. Kaitlyn is also anemic (not sure yet what is causing this) and she now has a fever again!!! We ......are awaiting chest x-rays and will likely end up back on antibiotics later today :( She seems to be refluxing quite a bit so aspiration is suspected. Our surgeon told us that her nissen likely isn't working since her stomach is paralysed! The nissen uses the contractions of the stomach to tighten making it functional! Good to know!!<br />
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October 13<br />
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What next?? I mean seriously!! Kaitlyn has Bacteremia, an infection in her blood!! All we know is it's a gram positive rod that grew in her blood culture yesterday. We did the culture because of the fever and how sick she looked yesterday morning....and because her chest didn't sound "that bad". The bacteria in the blood culture is not expected to be a contaminant as it grew in only six hours. We are waiting on sensitivities, but in the meantime have contacted Infectious Disease and they started her on antibiotics last night. Kaitl...yn is feeling sick. She is still gaggy and we are having to put her tube to straight drain. This means all oral meds have been stopped. The only good part if this is that it might not be a complete fail on her tummy!! This Sepsis could have caused her tummy to stop working again. We will have to put her tummy through another trial with the Cisapride once she is healthy again.<br />
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October 15<br />
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Kaitlyn has been responding well to the antibiotics for this blood infection. The sensitivities are back and she is growing Bacillus bacteria and Infectious Disease thinks it is from the port! TPN makes a great medium for bacteria to feed on causing infection! ID says the port shouldn't have to come out as long as she ...continues to get better!! We will do a two week course of antibiotics. Today she has tolerated having her tube elevated :) She is still NPO, but at least she seems to be fine with her own gastric juices now. She has been so nauseous over the past couple of days we had to put her on Zofran (antiemetic). We are ...going to leave her on Zofran until she starts tolerating a bit of pedialyte. We are hoping to start her cisapride again tonight in preparation for another stomach trial. Another issue we have been having since admission is getting her anticoagulated. Kaitlyn does not seem to be responding to or absorbing her coumadin. We have had her on twice her normal dose without any effect on her INR. This puts Kaitlyn at risk of developing blood clots due to her port! The issue now is we have been having some trouble getting her potassium to remain within normal levels. It dropped fairly low a couple of days ago and we are not sure why. We have had to give her a bolus over several hours of IV potassium and we have now increased the potassium in her TPN. This increases her anticoagulation needs!! We are now going to have to start giving Kaitlyn enoxaparin injections to "thin" her blood. Hopefully we will only have to do this for a few days!! These injections are painful!! We place insuflons so she doesn't have to feel each poke, but unfortunately the enoxaparin itself burns when it is injected :(<br />
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October 16<br />
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Kaitlyn is doing better yesterday and today. Since starting the Zoflan (for nausea and vomitting) she has been much more herself. The poor girl has been nauseous since we were admitted and her gut stopped working. When she got sick with this blood infection it got much worse! Poor thing was gagging about once an hour and getting no sleep! Yesterday I elevated her g-tube to see if she could tolerate her own stomach fluids. We did have her tummy draining. She tolerated this well and we have now restarted her Cisapride (motility med) and pedialyte is once again running at 1 ml... per hour :) Baby steps!!! By Tuesday or Wednesday, provided she remains well, we will trial her tummy on increased rates (Pedialyte only). If she doesn't tolerate the pedialyte then there will be no need to go any further with her tummy. At that point we will call the motility med a fail and move on to plan B.<br />
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Plan B is placing an NJ tube. Kaitlyn is no longer a candidate for a GJ tube as she has scar tissue in her bowel. (Scar tissue from past major bowel sugery to repair a lacerated and perforated bowel from a GJ tube replacement that went very wrong!!) Our surgeon has told us that he is not as concerned about placing the NJ temporarily as it is a much soft more flexible type of tubing. After placing the NJ tube, if needed, we will see if Kaitlyn can tolerate jejunal feeds. If she has no issues with jejunal feeds and can tolerate a high enough rate to provide enteral nutrition then we will schedule a surgery (post hast!!!) for a jejunostomy! Once the jejunostomy is placed we should be able to go home fairly quickly!! Within a week of surgery :) <br />
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October 19 <br />
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Kaitlyn has had a visit from her pediatrician, had an hour of Speech Therapy, a visit from Scout the Therapy Dog, and is now enjoying a visit from the Child Life Specialist who is making a counting book with Kaitlyn :) And it's only 11:00am....Busy Girl!!! Today is day four back on the Cisapride (motility med.). It is time to start challanging Kaitlyn's tummy to except higher rates of unflavoured pedialyte! We have only worked her up very slowly (1ml per day) to 5mls and her stomach contents are already getting a bit yellow/green. However, she seems to be tolerating the rate. We will continue to increase her rate at closer intervals throughout today and tomorrow and see how she does. If her tummy isn't digesting even pedialyte by Thursday then we are scheduled to place an NJ tube! The NJ tube will tell us if Kaitlyn can tolerate feeds/rates in her lower GI. If she can tolerate NJ feeds then we will schedule a surgery for next week and place a jejunostomy tube. Then we can work on getting her home ASAP! <br />
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Note: We have been asked why we don't place a GJ tube. ....Kaitlyn HAD a GJ tube when she was a year old. It was a fantastic option for us! We fed Kaitlyn into her Jejunum, bypassed the stomach and had decreased risk of aspiration. Kaitlyn had her longest stretches out of hospital when she had her GJ tube too! However, when Kaitlyn had her GJ tube for almost a year the J-portion of the tube was being routinely replaced and the radiologist lacerated and perforated her bowel. Kaitlyn had to endure seven hours of bowel surgery including a nissen/fundiplocation. The nissen would allow us to feed Kaitlyn into her stomach with reduced risk of aspiration of stomach contents. Kaitlyn now has scar tissue in her intestine that makes ever having another GJ tube high risk. <br />
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So we have also been asked: What makes an NJ tube safe when the GJ is not! Well the NJ tubing that is used is much softer/pliable than the rigid GJ tubing. There is less risk associated with placing an NJ tube than there is placing a GJ tube for Kaitlyn. The NJ tubing is much less likely to perforate or erode the scar tissue in Kaitlyn's bowel! The other reason is that the NJ tube is temporary/short term and would only be used long enough to see if Kaitlyn's intestine is affected by her dismotility! Our surgeon is refusing to place a Jejunostomy unless we can prove that Kaitlyn's intestine is still functioning. He has our best interests at heart!! <br />
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That's it for now :) Hopefully it won't be as long before my next post! Take care <br />
Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com2tag:blogger.com,1999:blog-3500850714657771223.post-72804006594619170262010-10-11T01:09:00.000-03:002010-10-11T01:09:29.650-03:00Gastroparesis :(<div></div><span style="color: black;"><strong>Many of you that follow Kaitlyn from day to day have already been updated on this current hospital stay. I have been meaning to update our blog for the few people outside of our SMA community that also follow our daughter. We have had several people ask about her condition. It is easier to write it all down here than it is to write individual letters!! For those of you that have already been updated...skip to the end for the past couple of days :)</strong></span> <br />
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Gastroparesis...gastroparesis...it's never going to sound good no matter how many times we say the word. Kaitlyn has been diagnosed with gastroparesis. This is a fancy term that means Kaitlyn's stomach has gone on Holidays and we have no idea when it will return. It means her tummy is paralysed. A tummy that is paralysed cannot contract to help push food along the digestive tract. This means that whatever we put in Kaitlyn's stomach just sits there for a very long time. She is unable to take in any nutrition orally (through her G-tube). Kaitlyn has been receiving IV nutrition called TPN (total parenteral nutrition). This is a kind of "food" that can be infused directly into Kaitlyn's veins. It will provide her with all of the nutrition she needs until we can figure out what to do about this paralysed tummy.<br />
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Let me go back a bit and fill you in on what's been going on. Here's a little timeline for you from the beginning until today:<br />
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September 23<br />
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Kaitlyn has been dealing with really poor digestion for the past couple of weeks. Up until yesterday I was getting about 40-45 mls per hour into her. Last night I could barely get 25 mls per hour into her and this morning she had a tummy full. I had to turn her feeds off. When I checked her tummy at 10am one hour past her normal feeding time...she still had ALL the food from the morning! (We know this because we aspirate Kaitlyn's tummy before addig more volume. Otherwise Kaitlyn vomits). To top this all off, Owen brought home a cold from the first week of school. Now Kaitlyn has it. Yesterday morning she aspirated secretions. Today she is really junky with an off/on fever. We are heading into the hospital.<br />
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<div>Sept. 23 (From our local Children's Hospital)</div><br />
<div>OK...so we are settled into our room. TPN is starting in a few minutes, as her gut has now completely shut down :( I am hoping a day or two rest on TPN and then we can begin feeds again REALLLLYYYYY SLOOOWWWLY. Her chest is getting worse as the evening begins, but blood work and chest x-rays taken this afternoon look pretty good, so we will see where this goes. So far the digestion is by far the worst thing happening! We are just watching the chest right now, no antibiotics yet</div><br />
<div>Sept 23<br />
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We are on complete tummy rest. She is on TPN and all oral meds have been DCed for now. We gave her ranitidine this evening to help her moss colored stomach contents and she spit that up!! I guess she's trying to give us a hint! NOTHING IN MY TUMMY....PLEASE. Right now she is really dehydrated. She is so dry right now that she went from sats in the eighties to sats in the mid-upper ninties. Her tongue is sticking to the catheters :( Kaitlyn's Pediatrician has upped her maintenance (the resident had it set at a very conservative rate). Hopefully she can begin to rehydrate now. We are waiting to decide on antibiotics for her chest when we see how she looks tomorrow morning. I suspect antibiotics will be the order of the day, although my girl has surprised me a time or two in the past ;P Our goal is to restart feeds over the next couple of days and just go very slowly!!</div><br />
<div>Sept 24</div><br />
<div>Kaitlyn had a rough night. She was so dehydrated that her RR was in the fifties and her HR was 160's-170's!! She also started with fevers which may have been the dehydration or may have been her worsening chest? This morning she is a little better hydrated (they have been hydrating her slowly due to the severity of her chest). Her RR and HR look better and she seems a bit more comfortable. She is sill having fevers though. A radiographer has reviewed Kaitlyn's chest x-ray from yesterday and the conclusion is that they can't rule out upper right pneumonia and based on her symptoms an upper right pneumonia fits. We have decided to treat her with antibiotics to be safe! We are using IV antibiotics as she doesn't seem to be tolerating ANYTHING orally. We are continuing total tummy rest for the next couple of days. Hopefully once we get this respiratory virus/pneumonia clearing we can begin weaning her back onto stomach feeds.</div><br />
<div>Sept 25</div><br />
<div>Kaitlyn is a little more stable respiratory wise this morning. It's amazing how much junk will come out when you are better hydrated! Her sats are still lower than normal, but at least we are in the nineties! Her tummy is still not working! She is not even digesting her own stomach enzymes/fluid. We have had to put her tummy to straight drain this morning as she had a really gaggy spell that scared me. She had over 35 mLs of yuck in there! She tends to vomit when her tummy is bothered!! (Yes, she does have a nissen :/) Her fever broke over night and so far has not come back :) I guess the antibiotics are doing something. Hopefully in a day or two we can start to think of trying her on a little pedialyte?? Once we get her back on feeds we can get out of here! We can do IV antibiotics at home :) </div><br />
<div></div>Sept 26<br />
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<div>OK...so last night Kaitlyn was really fussy. When I went out to the nurses' station to see what we could do, the nurses were like, "is that Kaitlyn we hear hollering"?? Yup! We ended up doing an x-ray of Kaitlyn's abdomin. Everything looks good. There are no signs of blockages or any anomaly. So since there was nothing on the x-ray, she has bowel sounds, her bowels are moving, and her tummy is soft, I thought well perhaps she is just hungry. She is getting nutrition through her port, but her tummy is still empty. She could still feel yucky with nothing in her belly. We decided to try her on 5 mLs of pedialyte. Well, she seemed to tolerate that so we set her pump on 10 mLs per hour and she stopped fussing and digested the 10 mLs per hour just fine all night long :) This morning she is back to not tolerating the pedialyte. But she is tolerating her tube being elevated (no longer straight drain). I think this is going to be a longer process than I had originally hoped. <br />
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We have put her back on her Glycopyrrolate through her G-tube. The alternative is to give it to her through her IV, but then we have to turn her TPN off each time we give it as the two are not compatible. We also need to be able to give her the coumadin tonight!! This will be the fourth night without it, and if she cannot tolerate the oral dose tonight then we will have to inject her with Enoxaparin :( I really don't want to have to start sub-Q Enoxaparin injections. Please keep your fingers, toes and eyes crossed that she wll continue to tolerate at least a teeny bit of pedialyte in her system!! Oh yeah....her chest sounds a bit better today. Fewer marbles rolling around (to steal a phrase from another SMA parent) :)</div><br />
<div>Sept 27</div><br />
<div>Kaitlyn had a much better day today respiratory wise. She actually spent a few nonfussing hours awake!! She watched some Dora and tried to talk a bit :) Her chest is still junky, but nowhere near what it was! I think the antibiotics have definitely helped. This morning we decided to try her on pedialyte very slowly!! I started her at 2 mLs per hour. Might seem kind of slow, but I REALLY wanted her to accept the rate! After a couple of hours it was obvious that she was going to be able to tolerate more so I bumped her up to 5 mLs per hour in the afternoon. This evening her rate went up to 10mLs per hour and she stopped digesting once again! GRRR! I guess it is back to a snails pace again tomorrow, if not tonight. We have started Domperidone (motility drug) in an attempt to help her digest her feeds. I know it takes a few days to get into your system, so I will hope it starts helping soon. I still want to be out of here by the end of the week! Hopefully Kaitlyn's tummy cooperates :)</div><br />
<div></div>Sept 28<br />
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<div>No big changes today :( Tummy is still not working! ...And I so wanted to be home by the end of the week! Tomorrow is Wednesday, so even if she starts tolerating consistent volumes with slow increases of ONLY pedialyte it will take AT LEAST three more days to get out of here. The doctors want to see her digesting at least half her normal rate consistantly of only pedialyte before we start adding diluted vivonex. Then building her up to a rate that nutritionally and from a hydration stand point will be manageable... from home......you get the picture. PLEASE, PLEASE, PLEASE let the domperidone (motility med.) do the trick! We are likely consulting gastroenterology tomorrow.<br />
</div><div></div>Sept 30<br />
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<div>Kaitlyn's tummy is still on Holidays :( We cannot seem to get even 2-3 mls per hour into her around the clock! She seems to be tolerating us putting three of her oral meds down her tube. I question how much is actually being absorbed when the same volume we put in is still there three hours later!! I have been questioning about going home on TPN! In Nova Scotia going home on TPN simply is not done....at least not very often ;) However, this morning I find out that our nursing agency doesn't even cover patients receiving TPN!!! In other words before we could go home we have to find a new agency and all new nurses! Not to mention getting Gastroenterology to sign off on the TPN so that we could go home at all!!! Please let Kaitlyn's tummy start working!!!<br />
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October 1</div><div>Bad news!! We have to remain in hospital for at least another two weeks, unless Kaitlyn's tummy starts working on it's own in the meantime!!! They won't allow us to go home on TPN unless she requires the TPN longterm! The gastroenterologist feels that Kaitlyn has gastroparesis :( They are going to request a modified dye test to make sure that there are not any other blockages/barriers preventing fluids from leaving the stomach. This will confirm the gastroenterologists suspicions that we are dealing with gastroparesis (paralysed stomach). The gastroenterologist has recommended that Kaitlyn be put on a med. called Cisapride (instead of domperidone). It is a controlled med. that we have to go through Health Canada to get! We should be able to start this med. by the middle of next week. We then have to wait at least a week before determining whether or not it will do the trick to get Kaitlyn's tummy working again! I am hoping her tummy decides to wake up on it's own!!! If it doesn't work we will have some tough decisions to make. Longterm TPN (AT HOME!!!) or a fixed J-tube (which there are no guarantees would solve our issues).</div><br />
<div>October 5/6</div><br />
<div>Two nights ago Kaitlyn had a bunch of pedialyte back up in her tummy. I turned the pump off as it was obvious that she wasn't digesting. A few hours later I checked her residuals and twenty mls of green fluid comes out her tube (bile). This shouldn't happen unless there is a blockage in the bowel. So Sunday we had more abdominal x-rays and the radiologist didn't see anything. This morning Kaitlyn woke up with a slightly swollen tummy (and I mean slightly) and she fussed a bit when we touched her tummy. Our doctors got concerned. The resident then came in and told me that there was an area on Kaitlyn's abdominal x-rays that they couldn't rule out a partial-blockage.<br />
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So we got bumped to the front of the line for a dye test this morning. Our doctors were concerned about a blockage that may need surgical intervention. They injected a radioactive dye into Kaitlyn's stomach (through her g-tube) and watched her abdomin under flouroscopy. Flouroscopy is like a live x-ray. You could see the dye enter the stomach...fill the stomach...and then....nothing! They waited a few minutes and then they tipped her on her right side (to facilitate drainage..as the tummy drains better while lying on your right side). Still nothing!! We had to turn her as far over on her right side as we could get her and almost tip her towards her belly before her tummy started to drain. When I say "drain"...I mean on the radiograph you could see a whisp of contrast leave the stomach (like a gray fog) and it rolled into the duodenim and very slowly started to dye the small intestine. It was seriously a trickle and took forever to stain the small intestine enough for them to send her upstairs and wait for the rest of the bowel to stain!!! We had to leave her completely on her right side the entire time. She then had another abdominal x-ray to view the rest of the bowel.<br />
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So what did the dye test show?? ...Nothing! There is no obstruction or partial blockage. Truely this is a blessing as a blockage would most likely have meant bowel surgery! In fact we had a surgery consult just before going to do the dye test. I really didn't want to have to put her through another surgery, especially bowel surgery again! In some ways this is still frustrating as we just want/need a reason why all this is happening! The dye test did confirm that she definitely does have gastroparesis. Her tummy did not move, it is completely paralysed.<br />
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So where do we go from here? Our plan right now is to try the Cisapride. We have to go through Health Canada for this med. It is a controlled med. in Canada. There can be serious side effects to the heart. We have taken all the necessary precautions though and Kaitlyn does not match ANY of the risk factors. Our heart specialist had to sign off for this med. Kaitlyn will be monitored VERY closely and will have heart follow ups after she starts this medication. This is our last hope before choosing to do something more drastic.<br />
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Our choices if the Cisapride doesn't work are to leave Kaitlyn on TPN for the rest of her life. And yes, this can be done. It might not be optimal, and definitely isn't preferred. However, if she is followed closely it can be done. Our other option is to elect to put her through yet another surgery and place a fixed J tube. I am not in favour of a fixed J tube solely because I have read too much about them being uncomfortable at the least. Sometimes they are painful and there is no guarantee that if we did place the tube that her bowel is still functioning well enough to take in enough nutrition even through a J tube! Then we will have put her through another surgery for nothing :( This is the most frustrated and helpless I think we have felt on this entire journey that is SMA!!</div><br />
October 7<br />
<div></div>So the new drug we were waiting for was denied!! That's right...the call came in yesterday that the new drug we were requesting release from Health Canada was denied! They wanted us to try some other motility meds. first before they would consider releasing the Cisapride. Our gastroenterologist wrote them back and told them why the "other" motility meds. wouldn't work and that he felt that the Cisapride (in his expert opinion) was the only med. that would work! Today the new med. was approved and it only put our schedule behind by a day! Thank goodness we have some good doctors here willing to go the extra mile for our girl!! Kaitlyn got the first dose of Cisapride tonight so we will see how it goes.<br />
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Kaitlyn's sats are a little lower today and HR is a little high. We had an episode last night that I am at a loss of words to explain??? She woke up whining (that high pitched there's something wrong whine). When I went to check on her she had a really high HR (170's) and there seemed like a little froth at her mouth. When I suctioned her (highly unusual for Kaitlyn during the night when on the vent) I got a TON of stuff out of her mouth!! Once I suctioned her mouth her HR went down almost to normal and she seemed to settle back to sleep. I didn't know what to think...did she vomit??? ....did she reflux??? ....had she perhaps aspirated some secretions??? I still don't know what to think!! However, all day today her HR was elavated and her sats were lower than the have been for the past three days. She had increased secretions today that were white and thicker than anything we pulled out of her in more than three days :( She is still on IV antibiotics from the aspiration pneumonia she is getting over. We may have to treat her for a few more days.<br />
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We have a chest x-ray scheduled for tomorrow morning. We wanted a healthy XR before discontinuing the IV meds. I guess we will have to see if something shows up! I really hope the Cisapride works to get her tummy moving. We are having a surgery consult tomorrow for a jejunostomy. <br />
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October 8<br />
<br />
Tim came to the hospital early today. We have a meeting with our surgeon today to discuss a jejunostomy. This is a surgically placed tube (like a gastrotomy or G-tube) that is placed directly into the small intestine. This way we could feed Kaitlyn's intestine and by-pass her sleeping tummy! Our pediatrician came in on her day off to be party to the discussion :) We are blessed with wonderful, dedicated doctors!!! <br />
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Our surgeon explained in great detail ( : P Thanks Dr. B) all the different proceedures and types of J-tubes that "could" be placed; and then he explained the type of tube placement that he would choose for Kaitlyn. He recommends and indeed will ONLY place a Roux-en-Y Jejunostomy for Kaitlyn. I won't get into details to explain how this particular surgery is done, but state the name of the type of proceedure in case anyone is curious to do some research :P I would also be happy to answer any private e-mails to the best of my ability!<br />
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However, our surgeon won't even touch Kaitlyn until we have trialled all methods to get stomach feeds restarted! We have to trial Cisapride for a week. If the stomach is unable to tolerate feeds after trialling Cisapride then we will have an NJ tube placed. An NJ or naso-jejunal tube is a tube that is placed through the nose, threaded dwn through the stomach and into the small intestine. Our surgeon feels that this tube should be very safe for Kaitlyn even in light of her past bowel sugery and resulting scar tissue!! The NJ tubing is apparently a much softer more pliable tubing than the rigid GJ tubing! He WILL NOT place a jejunostomy in Kaitlyn unless we can prove that she can even tolerate intestinal feeds!! He always has our daughter's best interest at heart! If Kaitlyn can tolerate intestinal feeds and her paralysis appears localized to her stomach then he will place the Roux-en-Y jejunostomy.<br />
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If Kaitlyn is not a candidate for a jejunostomy then she will have to go home on TPN for the rest of her life. This would not be the best option for our family or for Kaitlyn! <br />
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October 9/10<br />
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We are into days 2 and 3 of Cisapride and I am happy to say that we have more bowel sounds and Kaitlyn's tummy is doing some growling that it wasn't doing before!! I sure hope this is a sign her tummy is waking up. We increased her feeds (unflavoured pedialyte) from 3mls to 4 mls on the 9th. On the 10th we increased her feeds from 4mls to 5mls. Five mls was the amount her tummy would shut down on before the Cisapride! She tolerated the 5mls all afternoon on the 10th. She was backed up a bit this evening, so we turned her off for a couple of hours to catch up. At bedtime we turned the pump back on at 5mls per hour and so far she seems to be tolerating the rate :) Fingers and toes tightly crossed we may have a minor breakthrough here folks!!<br />
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Kaitlyn had a repeat EKG follow-up today, standard testing for Cisapride use. Her heart will be followed closely during our initial use of this new medication. So far everything looks good :)<br />
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That's it for now....I'll keep you all updated!! Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com1tag:blogger.com,1999:blog-3500850714657771223.post-32553941217746342182010-09-16T23:11:00.004-03:002010-09-17T00:23:55.114-03:00SMA Blog Party! What is SMA?What is SMA?<br /><br />SMA stands for Spinal Muscular Atrophy. A disease my husband and I had never heard of until our daughter was diagnosed more than three years ago. Spinal Muscular Atrophy Type 1 (SMA1) is a genetic disorder that occurs in 1 in 4 children born to parents who both carry a recessive gene for it. (1 person in 40 carries such a gene.) There are five main types of SMA, type 1 being the most severe and the most common. SMA affects one in every 6,000 live births. This disease is degenerative and affects the motor nerves, resulting in muscle wasting and weakness. Children born with the disorder gradually lose strength in their nervous systems and become paralysed. The paralysis includes the chest and therefore Type 1 children die from repiratory related illness, usually by the age of two. There is no known cure or long-term treatment.<br /><br />After learning Kaitlyn’s diagnosis we went home and researched anything we could find on the internet about SMA. The information was overwhelming for us and there were no options given to us from our local hospital about approaches we could take in caring for our daughter. There are really three options when caring for a type 1 child:<br />-Let nature take it’s course<br />-Using NIV approach (the method we chose for our daughter)<br />-Tracheotomy<br /><br />Kaitlyn has been through a great deal in her short life. She has become dependant on machines to help her breathe, to keep her lungs cleaned out, to feed her, to monitor her 24/7, and to help her move. She has had four surgeries and was intubated for each. One intubation was for major bowel surgery to repair a torn and perforated bowel from a misplaced J-tube. Kaitlyn has never been intubated for an illness (a bit of a rarity for Type 1 children). She has a port-a-cath, an internal catheter, placed for venous access. She has a blood disorder that causes her blood vessels to form clots. She has two holes in her heart (also a bit rare, so we are told).<br /><br />And in light of all this.....she laughs. Kaitlyn laughs because she is happy, because she is smart enough to know she has a reason....a right to be here! She is precocious, she is determined and she is strong. We adore how strong she is and how she never gives up (AKA stubborn). She is a joy and we are enjoying each and every moment with her!<br /><br />But what would Kaitlyn wish for....what would she most want, if she could tell us? I think she would ask us for a cure. A cure for this horrible disease! She would ask each of us to do what we can to spread the word about SMA, raise awareness, and help fund a cure for SMA. Well guess what folks...Here's an easy way to help Kaitlyn in our quest for a cure!! Go to: <a href="http://www.voteforsma.com/">http://www.voteforsma.com/</a> and vote for the Gwendolyn Strong Foundation in the Jimmie Johnson Helmet of Hope Contest as they are trying to win $20,000 towards a CURE for SMA. Please vote every day until the 29th of September. Ask your friends to join us in voting and feel free to join our blog party and tell your readers about SMA. You can talk about Kaitlyn :)<br /><br />Thanks for your time, and happy voting :)Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com2tag:blogger.com,1999:blog-3500850714657771223.post-77077448537206746822010-09-14T20:51:00.008-03:002010-09-15T20:52:07.030-03:00Kaitlyn Goes to Pre-school<div><div><div><div><div>Kaitlyn had her first day of pre-school today :) The entire day was packed with excitement! We started Kaitlyn's day early to finish her respiratory care before we had to leave the house. Tim did Kaitlyn's care while I got both boys ready for school and caught the live bird flying around in our living room. .....Wait a minute...did I say a live bird??? YES!!! I walked into the living room to see what had the cats all in a fit! Who was staring me back from the back of my couch but a real live bird!!! The poor thing was crashing into our big picture window in our living room and freaking out as our two cats were staring it down. The poor thing MUST have made it's way down our chimney! I have no idea HOW, but no doors had been open before I discovered him. Anyway, I got a towel and trapped him in the window. Then boys both wanted to see him up close and then I took him outside and he promptly flew away. He paused for a breather in a tree not too far from our deck, but was otherwise unharmed :) It's a miracle the poor thing didn't get hurt! </div><div></div><br /><div>We made it to pre-school on time and Kaitlyn enjoyed most of her day. She liked the free play time first thing in the morning. I layed her on the floor with a pile of toys and a few of the kids came right over and started playing with her. A couple of girls in particular played for extended periods of time :) Kaitlyn can already say one of their names and was asking for her tonight after supper. She kept saying the little girl's name and then saying please!! Then she called for the little girl.....Oh Iya! Oh Iya! We played with playdough, built block towers, played with dinosaurs (STOMP, STOMP, STOMP...good times:), sat in circle time, painted a picture during group time, and "ate" a snack! Kaitlyn got to "eat" cucumber slices with the rest of the kids :) Then the worst part of the day was watching the rest of the kids line up single file to go out through a door in the back of the classroom that leads to their inaccessable playground :( We got to go outside and around the building to watch the kids play, but could not participate. I think we will have to use this time for something more constructive for Kaitlyn, as it was quite sad. </div><div></div><br /><div>The plan is to attend pre-school two days a week for now and see how it goes. It is tiring and risky being exposed to so many germs, but to see our girl's face when she got to do what the rest of the kids were doing....priceless :) I am not sure if we will attend for the entire winter or not. I guess we will have to see how the winter unfolds. </div><div> </div><div> </div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/TJFbaYH-AII/AAAAAAAAA-Q/YkswaR5WKfQ/s1600/kaitlyn+pre-school+1.jpg"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5517291527216169090" border="0" alt="" src="http://3.bp.blogspot.com/_aPWLsmM4yoE/TJFbaYH-AII/AAAAAAAAA-Q/YkswaR5WKfQ/s400/kaitlyn+pre-school+1.jpg" /></a></div><div> </div><div> </div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/TJFbaxt02zI/AAAAAAAAA-Y/q8doQ-pN2so/s1600/kaitlyn+pre-school+2.jpg"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5517291534085839666" border="0" alt="" src="http://3.bp.blogspot.com/_aPWLsmM4yoE/TJFbaxt02zI/AAAAAAAAA-Y/q8doQ-pN2so/s400/kaitlyn+pre-school+2.jpg" /></a></div></div></div></div></div>Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com0tag:blogger.com,1999:blog-3500850714657771223.post-5572069076845171402010-07-28T21:53:00.008-03:002010-07-28T22:50:34.162-03:00We are Driving!<div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/TFDa2blPuXI/AAAAAAAAA88/KHh4V7bOvik/s1600/IMG_1614.JPG"></a><div><div><div>Kaitlyn's wheelchair has finally arrived! We have a custom pink bubble-gum paint job...custom seating...and very sensitive fibre-optic drive controls :) This has been and is going to be a learning process for all involved. Kaitlyn has been such a trooper through all of this! </div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/TFDa2mL2BmI/AAAAAAAAA9E/fEzSHH9uzpw/s1600/IMG_1615.JPG"></a></div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/TFDa1_6JrMI/AAAAAAAAA80/I2JyhuiB_d0/s1600/IMG_1612.JPG"></a></div><br /><div>Kaitlyn had her first try with the fibre-optic drive controls last week! Like a dummy, I forgot my camera :P I took some photos with my phone camera, but alas I have Vista and Vista does not like my phone :( LOL We had training session #2 today. We are having some minor issues trying to find exactly the right place to put the fibre-optic drive controls so that Kaitlyn can access the lights easily! She has so little movement left...even in her little fingers. With the fibre-optic lights all Kaitlyn has to do is interrupt the light beam with her finger and the chair will move until she moves her finger away from the light. She is doing well recognising that when she interrupts the light, the chair moves :) A little too well...LOL! Her OT was trying to get her to stop on command, and she would ask Kaitlyn to stop. Kaitlyn of course is looking all around and ignores the OT. The OT then corrects Kaitlyn by lifting her finger off of the drive control and Kaitlyn proceeds to holler at her :) As soon as we let her finger go you have to jump out of the way :) Move it or loose it!!! </div><div> </div></div><div><br /><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/TFDa0jF2rpI/AAAAAAAAA8k/Oxr8TWDuEMg/s1600/IMG_1606.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5499135741327224466" border="0" alt="" src="http://3.bp.blogspot.com/_aPWLsmM4yoE/TFDa0jF2rpI/AAAAAAAAA8k/Oxr8TWDuEMg/s400/IMG_1606.JPG" /></a><br /></div><div></div><br /><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/TFDa1aT2JxI/AAAAAAAAA8s/pBTO0yKd37M/s1600/IMG_1607.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5499135756149860114" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/TFDa1aT2JxI/AAAAAAAAA8s/pBTO0yKd37M/s400/IMG_1607.JPG" /></a></div><div> </div><div> </div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/TFDa1_6JrMI/AAAAAAAAA80/I2JyhuiB_d0/s1600/IMG_1612.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5499135766242634946" border="0" alt="" src="http://3.bp.blogspot.com/_aPWLsmM4yoE/TFDa1_6JrMI/AAAAAAAAA80/I2JyhuiB_d0/s400/IMG_1612.JPG" /></a></div><div> </div><div> </div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/TFDa2mL2BmI/AAAAAAAAA9E/fEzSHH9uzpw/s1600/IMG_1615.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5499135776517391970" border="0" alt="" src="http://3.bp.blogspot.com/_aPWLsmM4yoE/TFDa2mL2BmI/AAAAAAAAA9E/fEzSHH9uzpw/s400/IMG_1615.JPG" /></a> </div></div></div></div></div>Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com3tag:blogger.com,1999:blog-3500850714657771223.post-56070032303644844032010-06-14T00:15:00.006-03:002010-06-14T01:14:19.428-03:00MDA Walk 2010<div><div><div><div><div><div><div><div>Yesterday was our Walk for the Muscular Dystrophy Association here in Halifax. It was a beautiful sunny day. It was rather hot though :( Kaitlyn gets a little fussy in the heat. She made it through the day though and seemed to enjoy the Walk for the most part :)</div><div></div><br /><div>There were a lot of people at the walk this year. Most individuals/teams either met or exceeded their goals for fundraising. We are thrilled to be able to give back. MDA has been very supportive to Kaitlyn. They have provided many peices of medical equipment over the past three years. Thanks MDA Canada!!</div><div></div><br /><div>Here are a few photos of our Walk. Sparky the firedog was at our event :) Sparky paid Kaitlyn a special visit after the walk! She was thrilled...she adores Sparky!! </div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/TBWoxrtXN9I/AAAAAAAAA7w/qz3_vjPe2ug/s1600/IMG_1553.JPG"></a> </div><div> </div><div><a href="http://4.bp.blogspot.com/_aPWLsmM4yoE/TBWow_v9C_I/AAAAAAAAA7g/c4OqfXHAmgE/s1600/IMG_1550.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5482473681093200882" border="0" alt="" src="http://4.bp.blogspot.com/_aPWLsmM4yoE/TBWow_v9C_I/AAAAAAAAA7g/c4OqfXHAmgE/s400/IMG_1550.JPG" /></a></div><div> </div><div> </div><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/TBWoxRYl4QI/AAAAAAAAA7o/0dKdLTgbJvI/s1600/IMG_1551.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5482473685827051778" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/TBWoxRYl4QI/AAAAAAAAA7o/0dKdLTgbJvI/s400/IMG_1551.JPG" /></a></div><div> </div><div> </div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/TBWoxrtXN9I/AAAAAAAAA7w/qz3_vjPe2ug/s1600/IMG_1553.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5482473692893493202" border="0" alt="" src="http://1.bp.blogspot.com/_aPWLsmM4yoE/TBWoxrtXN9I/AAAAAAAAA7w/qz3_vjPe2ug/s400/IMG_1553.JPG" /></a></div><div> </div><div> </div><div><a href="http://4.bp.blogspot.com/_aPWLsmM4yoE/TBWpeiYyN9I/AAAAAAAAA8I/J3jXkgGIcpA/s1600/IMG_1563.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5482474463485376466" border="0" alt="" src="http://4.bp.blogspot.com/_aPWLsmM4yoE/TBWpeiYyN9I/AAAAAAAAA8I/J3jXkgGIcpA/s400/IMG_1563.JPG" /></a></div><div> </div><div> </div><div><a href="http://4.bp.blogspot.com/_aPWLsmM4yoE/TBWoyXf7cuI/AAAAAAAAA74/PLQo3ahkbYs/s1600/IMG_1558.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5482473704648307426" border="0" alt="" src="http://4.bp.blogspot.com/_aPWLsmM4yoE/TBWoyXf7cuI/AAAAAAAAA74/PLQo3ahkbYs/s400/IMG_1558.JPG" /></a></div><div> </div><div> </div><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/TBWoyh4QygI/AAAAAAAAA8A/s17N69eztbM/s1600/IMG_1561.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5482473707434723842" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/TBWoyh4QygI/AAAAAAAAA8A/s17N69eztbM/s400/IMG_1561.JPG" /></a></div><div> </div><div> </div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/TBWpfBdf1QI/AAAAAAAAA8Q/YfXIyG1WzGw/s1600/IMG_1565.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5482474471826642178" border="0" alt="" src="http://3.bp.blogspot.com/_aPWLsmM4yoE/TBWpfBdf1QI/AAAAAAAAA8Q/YfXIyG1WzGw/s400/IMG_1565.JPG" /></a></div><div> </div><div> </div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/TBWpfQNKIkI/AAAAAAAAA8Y/pam2MbA3OeQ/s1600/IMG_1566.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5482474475784643138" border="0" alt="" src="http://3.bp.blogspot.com/_aPWLsmM4yoE/TBWpfQNKIkI/AAAAAAAAA8Y/pam2MbA3OeQ/s400/IMG_1566.JPG" /></a></div></div></div></div></div></div></div></div>Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com0tag:blogger.com,1999:blog-3500850714657771223.post-74854468784303270202010-06-05T22:21:00.010-03:002010-06-05T23:34:49.418-03:00EHS & Sparky the Fire DogWe are in the process of updating Kaitlyn's Special Patient Card with Emergency Health Services. A special patient card is a protocol we set in place so that Ambulance drivers know what to do in the event that we should have an emergency with Kaitlyn and need their services. In setting up this new protocol we have had the pleasure of meeting an EHS supervisor who has taken an interest in Kaitlyn. He has requested that our hospital set up an information day where they can learn more about Kaitlyn's condition :) They have also asked the firefighters at our local fire department to attend. The firefighters are our first responders :)<br /><br />As a result of our meeting with the EHS supervisor, our local fire chief payed Kaitlyn a visit a couple of weeks ago. He brought us a reflective house number; much more visible signage for EHS and anyone else needing to find our house! They even took the time to find us a sign post, pounded it into the ground and hung the sign! The firefighters also arranged to have our road sign moved. The sign was originally placed on a telephone pole about 15-20 feet from the main road. Thank you very much to our local Fire department!<br /><br />When the fire chief visited he said that he would send Sparky the Fire Dog over the next weekend to see Kaitlyn :) So today Sparky the Fire Dog walked into a very happy little girl's room!!! She was beaming from ear to ear :) She absolutely LOVES dogs and to see this great big "dog" in her bedroom tickled her :) Sparky gave Kaitlyn a stuffed dalmation dog and a firehat :) She LOVES both! Kaitlyn took the dalmation dog to bed with her :)<br /><br />The Fire Chief also brought several firefighters and a firetruck over. They opened up all the compartments on the firetruck and let Kaitlyn, Alexander and Owen check out anything they wanted :) This was so nice of them!! Our children don't get to go out as much as we may like so they were thrilled to have a visit from a firetruck and Sparky. They will talk about this for days now :) Thank you again to our local Fire Department! You guys are great!<br /><br /><div><div><div><br />This is how Sparky arrived for his visit :)<br /><br /><div><div><div><a href="http://4.bp.blogspot.com/_aPWLsmM4yoE/TAr_xT_yOgI/AAAAAAAAA6Y/diyyuII-30I/s1600/IMG_1538.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5479473119296109058" border="0" alt="" src="http://4.bp.blogspot.com/_aPWLsmM4yoE/TAr_xT_yOgI/AAAAAAAAA6Y/diyyuII-30I/s400/IMG_1538.JPG" /></a> </div><div> </div><div>Kaitlyn and Sparky :) </div><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/TAsA2jXO3UI/AAAAAAAAA60/1icI7XMVj0o/s1600/IMG_1518.JPG"></a> </div><div></div><div></div><div></div><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/TAsA3UeTzOI/AAAAAAAAA7E/8UdHWqHztFo/s1600/IMG_1528.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5479474322014981346" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/TAsA3UeTzOI/AAAAAAAAA7E/8UdHWqHztFo/s400/IMG_1528.JPG" /></a></div><div> </div><div>Kaitlyn and her loot :) </div><div> </div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/TAsA3t3vVhI/AAAAAAAAA7M/StsaxiHERn4/s1600/IMG_1524.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5479474328832529938" border="0" alt="" src="http://3.bp.blogspot.com/_aPWLsmM4yoE/TAsA3t3vVhI/AAAAAAAAA7M/StsaxiHERn4/s400/IMG_1524.JPG" /></a></div><div> </div><div>She likes big trucks after all...LOL</div><div> </div><div></div><div></div><div></div><div></div><div></div><div><a href="http://4.bp.blogspot.com/_aPWLsmM4yoE/TAr_x1i843I/AAAAAAAAA6o/y4e-86-tQW8/s1600/IMG_1506.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5479473128301978482" border="0" alt="" src="http://4.bp.blogspot.com/_aPWLsmM4yoE/TAr_x1i843I/AAAAAAAAA6o/y4e-86-tQW8/s400/IMG_1506.JPG" /></a></div><div> </div><div>Sparky was so nice to Kaitlyn</div><div> </div><div></div><div></div><div></div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/TAr_xu0-hFI/AAAAAAAAA6g/iIZxqRmeI5s/s1600/IMG_1515.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5479473126498534482" border="0" alt="" src="http://1.bp.blogspot.com/_aPWLsmM4yoE/TAr_xu0-hFI/AAAAAAAAA6g/iIZxqRmeI5s/s400/IMG_1515.JPG" /></a><br /><br />She even tried to wave to him :)<br /></div><div><a href="http://4.bp.blogspot.com/_aPWLsmM4yoE/TAr_w8Jkp7I/AAAAAAAAA6Q/YNL9oMucWgQ/s1600/IMG_1513.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5479473112894711730" border="0" alt="" src="http://4.bp.blogspot.com/_aPWLsmM4yoE/TAr_w8Jkp7I/AAAAAAAAA6Q/YNL9oMucWgQ/s400/IMG_1513.JPG" /></a> </div><div> </div><div>Alex loved the firetruck too!</div><div> </div><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/TAsA2jXO3UI/AAAAAAAAA60/1icI7XMVj0o/s1600/IMG_1518.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5479474308831960386" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/TAsA2jXO3UI/AAAAAAAAA60/1icI7XMVj0o/s400/IMG_1518.JPG" /></a></div><div> </div><div>Firefighter Alex...hehehe</div><div> </div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/TAsA3KpbQCI/AAAAAAAAA68/pxch9J3aZow/s1600/IMG_1520.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5479474319377252386" border="0" alt="" src="http://1.bp.blogspot.com/_aPWLsmM4yoE/TAsA3KpbQCI/AAAAAAAAA68/pxch9J3aZow/s400/IMG_1520.JPG" /></a><br /><br />Kaitlyn took "Sparky" to bed :) (She calls her dalmation Sparky)</div><div> </div><div><a href="http://4.bp.blogspot.com/_aPWLsmM4yoE/TAsA37of76I/AAAAAAAAA7U/AIIpRaxkiiU/s1600/IMG_1544.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5479474332526702498" border="0" alt="" src="http://4.bp.blogspot.com/_aPWLsmM4yoE/TAsA37of76I/AAAAAAAAA7U/AIIpRaxkiiU/s400/IMG_1544.JPG" /></a> </div></div></div></div></div></div>Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com3tag:blogger.com,1999:blog-3500850714657771223.post-84449464631397257752010-03-04T00:56:00.009-04:002010-03-04T14:31:18.195-04:00Ready...Set...Drive :)Sorry I haven't written in a while. I wanted to update everyone on Kaitlyn's fundraiser for her power chair!! The fundraiser was a success! We were able to reach our goal. Kaitlyn WILL have her wheels! Our next fun....driving :) Look out brothers, walls, kittens....here she comes! We are thrilled for her to say the least :)<br /><br />The chair will take a couple of months to build! We are having them build specialized vent trays to carry all of Kaitlyn's machines. She is getting an Invacare base. The vent trays are being built from scratch. Her seating is also being custom built :) It will fit her like a glove. We will of course have to replace the seating more often this way, but it is much more comfortable and supportive for Kaitlyn. She will use fibre optics for drive controls. This will take Kaitlyn longer to figure out than a joystick, but ANY mobility is better than no mobility!!! She will eventually figure it out and drive like a pro!!<br /><div></div><div></div><div><br /></div><div>I cannot wait to take pictures and video for ALL who have supported us! Speaking of which I want to thank everyone for your heartfelt support! People are extremely generous when it comes to the needs of a child! We had people attend our fundraiser that won the fifty/fifty draw and donate their winnings back to our cause.....people that could have used the money themselves!!! This overwhelming support for our daughter is NOT unnoticed!! We are just so grateful to our entire community for once again pulling together and reaffirming once again why we are so proud to be part of such a small town :) We may have a city address but our hearts are rural rooted!!! </div><div></div><div></div><div><br /></div><div>We have also been so proud of our SMA community!! You guys are above and beyond! People facing the exact same struggles as us and they scrape together a donation for our cause!!!! This kind of act is unheard of in other "communities". We are so very greatful for your support. Our daughter would NOT be alive today if it were not for the SMA families and what they have already shared with us! Then this.....it's just so overwhelming for us! We don't know where to begin to say THANK YOU! The thanks will be in our daughter's face when she figures out the freedom the power chair has to offer!! </div><div></div><div><br /></div><div>On another note, we have been battling a string of nasty lung infections! Bacterial pneumonias, back to back, and NOT fun!!! Kaitlyn colonizes pseudomonas (two strains...oral antibiotic resistant!), Stapholococcus Aureus, and Stenotrophomonas Maltophilia! The infections almost always hit in the same way! She starts with increased secretions, developing to a level that she becomes bi-pap dependant to control them. She almost always has fever (high 38's to 42)! Secretions are always at some point green or greenish! Then her lungs get "junky" (wet)! This can sometimes develop over a couple of days or sometimes happens as fast as 12-18 hours!! </div><div></div><div><br /></div><div>She was sick just two weeks ago! This past illness hit her fast! She woke up a Monday morning with slight increase in secretions. She had a fever (39.4) by late morning. By afternoon she was bi-pap dependant! By evening we could finally hear the junk rattling around in her chest...up to that point she had been clear! We decided to keep her home and call the pediatrician in the morning. I had planned to get up with her through the night! When Kaitlyn gets junk in her lungs she needs chest physiotherapy (chest clapping/CPT) and cough-assist every two to three hours around the clock!! After her 2:00am treatment she was maintaining sats of 82-84 on 6 litres of O2 through her bi-pap (ventilator), with increased settings!! We decided to wake the boys and take her in to the ER! </div><div></div><div><br /></div><div>As always she grew the same things in her cultures. She had white cell counts of 27.9 (normal 6.0-15.0)!!! Her platelet count was 107 (normal 150-400)!!! Crazy! This typically indicates severe infection! There has never been any indication of bladder or blood infection. Sometimes her ear (right-the one she lays on) looks infected. </div><div></div><div><br /></div><div>Our question to the experts is can this happen with aspiration (that fast)?? Or does it sound more like bacterial infection in the lungs?? We are wondering if there is anything we can do to prevent these pneumonias!! It is so hard on our girl being sick!! She has been on antibiotics since last September...almost constantly!! Our longest stretch is 20 days!! </div><div></div><div><br /></div><div>We hope everyone else has had a healthier winter so far than us! We are very impatiently awaiting spring and warmer weather!!</div><div> </div><div> </div><div>Kaitlyn being her cheeky self :) <br /></div><div></div><div><br /></div><div></div><div></div><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/S4_Y5dsfswI/AAAAAAAAA58/sm5bpUozSwY/s1600-h/IMG_1357.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5444808956249617154" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/S4_Y5dsfswI/AAAAAAAAA58/sm5bpUozSwY/s400/IMG_1357.JPG" /></a></div><div> </div><div> </div><div>My boys playing baby!! They pull their shirts down over their knees and waddle around the house =D </div><div> </div><div><a href="http://4.bp.blogspot.com/_aPWLsmM4yoE/S4_Y4zKTnbI/AAAAAAAAA50/LXPjr0dbpfw/s1600-h/IMG_1348.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5444808944831929778" border="0" alt="" src="http://4.bp.blogspot.com/_aPWLsmM4yoE/S4_Y4zKTnbI/AAAAAAAAA50/LXPjr0dbpfw/s400/IMG_1348.JPG" /></a><br /></div><div> </div><div>Kaitlyn sitting in her floor sitter talking to Owen! </div><div></div><div><br /></div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/S4_Y4hHhp4I/AAAAAAAAA5s/yfSJqxFeIpg/s1600-h/IMG_1344.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5444808939988428674" border="0" alt="" src="http://1.bp.blogspot.com/_aPWLsmM4yoE/S4_Y4hHhp4I/AAAAAAAAA5s/yfSJqxFeIpg/s400/IMG_1344.JPG" /></a></div>Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com2tag:blogger.com,1999:blog-3500850714657771223.post-37692871019439904462010-01-25T14:37:00.015-04:002010-02-09T22:00:24.783-04:00Help Kaitlyn Get Her Wheels!<p align="center"><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/S13lYLMKPuI/AAAAAAAAA4o/aTVmenoPQ4o/s1600-h/17436_283687507805_769097805_4540356_3968495_n.jpg"><img style="WIDTH: 349px; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5430748929162100450" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/S13lYLMKPuI/AAAAAAAAA4o/aTVmenoPQ4o/s400/17436_283687507805_769097805_4540356_3968495_n.jpg" /></a><br /><br /></p><br /><p align="left">We have now officially been fighting for a mobilised wheel chair for our daughter for two whole years. When Kaitlyn was 15 months we started questioning about a power chair as we knew that it could sometimes take several months to get our own chair. We figured that by the time that Kaitlyn was 20-22 months (2 years old maximum) she would have her power chair and she would learn to be mobile. Children diagnosed with conditions that do not allow them to walk should be given some form of mobility around the same age that they would "normally" be starting to walk. It has been shown and printed in articles that children as young as 18-19 months are old enough to learn how to drive a power chair! </p><p align="left">We put Kaitlyn in a power chair at around 18 months, and although the chair was a mismatched set of parts she totally GOT how to make that chair move! The parts were borrowed from a local wheelchair dealer and our local hospital. We never could get the drive controls right as we didn't have proper seating. I'll try to explain. Imagine that Kaitlyn has less tone than a newborn baby and is weaker too! She needs full body support from the top of her head to the tip of her toes in order to maximize all the strength she can muster!! Without full body support she cannot use her limited movement to operate drive controls on a power chair. </p><p align="left">After several "trials" with mismatched parts it became more and more obvious that Kaitlyn needed a proper chair (seating, hand/arm positioning, drive controls, chair functions!!!). Something that could provide her with the support she needs and the features that would make learning to drive possible! As Kaitlyn's condition is degenerative she has lost a LOT of function in two short years :( This has made our task even more challenging! As a result, upping the price of a power chair. </p><p>Kaitlyn's new power chair will have power seating functions (tilt, recline) as she will need to adjust her own chair for comfort! She will drive her chair with fibre optic switches as we could not convince our OT that Kaitlyn would be able to drive with a mini proportional joystick. She needs to be able to move a body part in all four quadrants (left, right, forward, backward). We were unable to demonstrate this with the type of mini-joystick provided for two trials! The good thing is that Kaitlyn's chair will be able to support different types of drive controls, so her chair will adapt to her needs down the road :) This chair will also come equipped with vent trays so that we can lug cough-assist, vent, suction, feed pump and oximeter wherever we go!! </p><p>Wheel chairs can often be funded through various funding programs. However, since Kaitlyn's chair requires such an elaborate set-up and sensitive controls the price tag is much higher than most chairs. We have managed to raise the majority of the cost of the chair with the help of our local children's hospital. The major funding support comes from PC Children's Charity in the sum of $20,000!!! To all of you who have supported the Superstore when they have their yearly Charity drives (when they ask us at the checkout if we would like to donate 1-2 dollars to their Children's Charity) I thank you from the bottom of our hearts. Now you know where that money goes!!! Right back into the community :)<br /><br /></p><p>We were told in January that we need to raise the remaining funds needed for Kaitlyn's chair. The Children's Charity funds must be used before the end of six months from the time it's awarded. We got an extension, but that still only gives us until mid-March! As such, this fundraiser means a great deal to us as it is our last chance to get Kaitlyn her wheels!! </p><p>My mother and sister have been organising this fundraiser. They are working tirelessly to make sure that this event is a success! They have decided to have the event in Annapolia Royal at the local Firehall. The date is the 21 st of February, 2010 starting at 1:00pm. They have arranged for local musicians:</p><p>Fender Benders - Country/Rock</p><p>Janis Sheridan-vocals </p><p>Jacquelyn d'Eon - Fiddle</p><p>Matthew Stanton - Guitar/vocals</p><p>Cecile Martell - Guitar/vocals</p><p>And more... </p><p>We will also be auctioning off a few items, selling tickets on some items and a bake sale, among other surprises :) </p><p><span style="color:#000000;">Please come and join us for an afternoon of fun! Kaitlyn and I cannot attend the fundraiser in person, but we are hoping to be able to attend via Skype! We will be able to see everyone and everyone will see us through the web camera on my laptop :) </span><span style="color:#cc0000;">If you cannot make the benefit and would like to make a donation you can mail it to "Kaitlyn Hatchard c/o Kathy Horton PO Box 316, Bridgetown NS, B0S1C0" Any check donations may be made payable to Tim or Kimberley Hatchard. "WE NOW HAVE A PAY PAL ACCOUNT!!" Just go to the link on the top right of this page :) </span></p><p align="left"><br /></p><br /><br /><br /><p align="left"></p>Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com0tag:blogger.com,1999:blog-3500850714657771223.post-26232262122229471182010-01-08T21:49:00.008-04:002010-01-09T00:55:10.834-04:00The New Year Catch Up!<div><div><div><div><div><div><div><div>Oh my goodness!!! I think I left this post too long :) OOooppss! Where to start! </div><div></div><br /><div>Christmas was great!! We were all very briefly healthy :) All three kids "got" Christmas this year. They were all excited to receive gifts from Santa. Owen kept saying, "I have to be good, 'cause Santa's watchin'....right Mom"? HEHEHE Alex was just excited :) And Christmas Eve we were getting Kaitlyn ready for bed and we were telling her that she had to go to bed and go to sleep so that Santa would visit! She said, "Santa....present....doll-doll"! Let's just say, Santa delivered :O) She is doing really well with her verbal speech these days. </div><div></div><br /><div>Kaitlyn finished her last round of antibiotics a couple of days before Christmas. This is our longest stay off of antibiotics since early September (for recurrent chest infections/bacterial pneumonia). Currently we are dealing with a head cold. Sniffles and coughing all around, but Kaitlyn is handling it like a pro! So far no chest infections (fingers and toes crossed please people)! </div><div></div><br /><div>Kaitlyn finally got her much needed floor sitter. Our local children's hospital made her chair. It is molded specifically for Kaitlyn and we have adapted the chair to meet her every need. When Kaitlyn wears her body brace she is supported from head to toe in this chair :) The floor sitter also has a clear plastic tray. Kaitlyn LOVES to sit up in this chair! She cannot tolerate long periods, but I think she digs the view :) </div><div></div><br /><div>Kaitlyn was approved for RSV shots again this year!! YAY!!!! This is huge for us. RSV is an incredibly dangerous virus for any respiratory compromised individual. For someone like a child with SMA it can be deadly! (Seriously) RSV shots are not a guarantee that one will not get the virus but it does provide protection! Kaitlyn had RSV last year while receiving the shots but her symptoms of the virus were far less than that of any of the rest of our family. The rest of us were really sick. I don't EVER recall being that sick!!! We are convinced that the reason Kaitlyn faired so well with the RSV was because of the RSV shots! She gets two shots (a divided dose) one needle in each of her legs every month from the beginning of December until the beginning of April! This is the worst of the RSV season for our region. This is not fun...but necessary!</div><br /><div></div><div>Kaitlyn has been approved for an LTV 1150 ventilator. This ventilator has the ability to deliver higher pressures than what Kaitlyn's current bi-pap (ventilator) can provide. It is said that the vent provides better ventilation for our SMA children. I guess we will see. The machine is a little heavier and slightly bigger than what we have now, but we'll adapt. We like that it has an internal battery for transport and for when Kaitlyn is sick. It will come with it's own stand to make it easier to move from room to room :) Our goal is to keep Kaitlyn's current bi-pap to have as a back-up vent in case the new LTV should ever fail :( </div><br /><div></div><div>Speaking of failing back-ups!!!! Kaitlyn's newest cough-assist is broken. Apparently there is a broken spring inside that needs replacing. The replacement is simple, but the cough-assist has to go to the States to be fixed!!! This means that we are without a back-up cough-assist for several weeks. A few months ago our hospital only had one cough-assist. I think they may have a second now, but they couldn't lend us one should Kaitlyn's primary cough-assist fail :( Our home care company that takes care of our home equipment needs doesn't even have a cough-assist so we cannot get one from them!!! I really hope our secondary cough-assist machine makes it to and from the States safely and quickly!!! </div><div></div><br /><div>I think that's everything for now ;)</div><div> </div><div> </div><div>Kaitlyn sitting in her floor sitter. All ready for bed :)</div><div> </div><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/S0gHaeBmESI/AAAAAAAAA2w/ncOq3jSssBM/s1600-h/IMG_1196.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5424593902485508386" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/S0gHaeBmESI/AAAAAAAAA2w/ncOq3jSssBM/s400/IMG_1196.JPG" /></a></div><div> </div><div>Kaitlyn sporting piggys and having fun sitting up :)</div><div> </div><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/S0gHasl9kkI/AAAAAAAAA24/nMtaO00nFRE/s1600-h/IMG_1226.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5424593906396140098" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/S0gHasl9kkI/AAAAAAAAA24/nMtaO00nFRE/s400/IMG_1226.JPG" /></a></div><div> </div><div>Christmas morning :) </div><div> </div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/S0gHayXVd3I/AAAAAAAAA3A/SBsBlV5Sxcw/s1600-h/IMG_1271.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5424593907945404274" border="0" alt="" src="http://3.bp.blogspot.com/_aPWLsmM4yoE/S0gHayXVd3I/AAAAAAAAA3A/SBsBlV5Sxcw/s400/IMG_1271.JPG" /></a></div><div> </div><div>Owen discovering Christmas gifts ;) Don't touch....have to wait for sissy!! </div><div> </div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/S0gHbIkiHxI/AAAAAAAAA3I/bnbE1guhcLM/s1600-h/IMG_1274.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5424593913906339602" border="0" alt="" src="http://1.bp.blogspot.com/_aPWLsmM4yoE/S0gHbIkiHxI/AAAAAAAAA3I/bnbE1guhcLM/s400/IMG_1274.JPG" /></a></div><div> </div><div>Alex discovering gifts! Sissy's almost ready!!! </div><div> </div><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/S0gHbv_JITI/AAAAAAAAA3Q/Rwinmy4zgSs/s1600-h/IMG_1281.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5424593924486930738" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/S0gHbv_JITI/AAAAAAAAA3Q/Rwinmy4zgSs/s400/IMG_1281.JPG" /></a></div><div> </div><div>Kaitln with some of her loot :) Happy girl. Want to know what she is smiling at....???</div><div> </div><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/S0gIxXj-lRI/AAAAAAAAA3c/mKxiTEzFgkY/s1600-h/IMG_1302.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5424595395399292178" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/S0gIxXj-lRI/AAAAAAAAA3c/mKxiTEzFgkY/s400/IMG_1302.JPG" /></a></div><div> </div><div>Kaitlyn's favourite Christmas present.....Owen's toy dinosaur that walks and roars :) :) </div><div> </div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/S0gIxk5gRXI/AAAAAAAAA3k/MO42TmJTIAc/s1600-h/IMG_1311.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5424595398979241330" border="0" alt="" src="http://1.bp.blogspot.com/_aPWLsmM4yoE/S0gIxk5gRXI/AAAAAAAAA3k/MO42TmJTIAc/s400/IMG_1311.JPG" /></a></div><div> </div><div>Kaitlyn with more gifts all cozy in her bed :)</div><div> </div><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/S0gIyN7H12I/AAAAAAAAA3s/oKjOMUFTVXw/s1600-h/IMG_1325.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5424595409991882594" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/S0gIyN7H12I/AAAAAAAAA3s/oKjOMUFTVXw/s400/IMG_1325.JPG" /></a></div></div></div></div></div></div></div></div>Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com1tag:blogger.com,1999:blog-3500850714657771223.post-40957020020040570922009-11-26T09:40:00.004-04:002009-11-26T10:59:36.773-04:00Ear Pillows<div>About a year ago now Kaitlyn started having continuous problems with breakdown on both ears from having to constantly lay on them. Even off-loading by rolling her from side to side didn't work. We would get raw skin that would lead to infections even though we kept the skin as clean and dry as humanly possible! At one point our infections were so bad we had to see plastic surgery as we thought that the infection might be in the cartilage of the ear!!<br /><br />When our pediatrician told us how serious the infection could be if it were in the cartilage of the ear we knew we had to find a way to get Kaitlyn's ears up off of the surface she was laying on! I thought that if Kaitlyn were to lay on a pillow with a hole in the center then she could still be sidelying while having her ear completely suspended (zero pressure)! (Sidelying for a child with SMA type 1 is essential as they cannot swallow. It allows them to pool secretions in their cheek and even spit out secretions so that they do not aspirate.)<br /><br />I like to use flannel fabrics when making my pillows. I find flannel absorbs moisture quickly and washes really well. The flannel is also soft and I find it irritates Kaitlyn's skin less. I started with a circle of fabric slightly larger than Kaitlyn's head. For us at that time a dinner plate worked great as a template for marking my fabric. Any circle shape the right size will work to make a pattern for cutting out your fabric. When cutting out my circle I always fold my fabric in half with the right side in. This way I cut out both sides of the pillow at the same time. I then take these two circles with the right side still in, and I sew around the outside with a sewing machine.<br /><br />I then fold the circle shape in half and cut out a small semi-circle in the middle. The hole in the center of the pillow does not need to be any larger than your child's ear! The smaller the hole the easier it will be to position your child on the pillow when it is finished. I always find that if I cut out the hole to fit Kaitlyn's ear then the finished product will be slightly larger than her ear.<br /><br />I then turn the fabric right side out and begin sewing up the ear hole. For Kaitlyn's pillows I like to turn the fabric in and sew a nice smooth edge (seamless). This way there is no edging to rub against her ears. Once I have the hole about two-thirds closed I then stuff the pillow with a hypoallergenic polyfoam stuffing. I like to use a proper pillow stuffing as it holds it's shape quite nicely through continuous washings! Once the pillow is stuffed full I sew up the rest of the ear hole. I stuff my pillows full but not too firm! </div><div> </div><div>I have had several families ask me recently how I make Kaitlyn's ear pillows so I thought that I should just post how I make them :) I hope this helps any families interested in making their own pillows! I know for us Kaitlyn is on an ear pillow 24/7 now!! </div><div><br /><br /></div><div></div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sw6W0NwchvI/AAAAAAAAA1k/hacgwqOXIwc/s1600/IMG_0262+(2).JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5408426026308765426" border="0" alt="" src="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sw6W0NwchvI/AAAAAAAAA1k/hacgwqOXIwc/s400/IMG_0262+(2).JPG" /></a></div><div> </div><div> </div><div><a href="http://4.bp.blogspot.com/_aPWLsmM4yoE/Sw6W0XkaPyI/AAAAAAAAA1s/rAfsMgs6dw4/s1600/IMG_0263+(2).JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5408426028942638882" border="0" alt="" src="http://4.bp.blogspot.com/_aPWLsmM4yoE/Sw6W0XkaPyI/AAAAAAAAA1s/rAfsMgs6dw4/s400/IMG_0263+(2).JPG" /></a></div>Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com1tag:blogger.com,1999:blog-3500850714657771223.post-46597383783868234192009-11-23T23:49:00.004-04:002009-11-24T07:04:59.952-04:00PICU and Another Lengthy Hospital StayRemember when Kaitlyn was sick with a pnuemonia back in September?? Well it would seem that we never really ever got that cleared up!!<br /><br />Kaitlyn was on ciprofloxacin (broad spectrum antibiotic) back in September for an illness that seemed bacterial in nature. We know Kaitlyn colonizes pseudomonas in her lungs so cipro is always our drug of choice when she gets an infection. Well back in September cipro didn't work to get rid of the infection. Kaitlyn ended up hospitalised on IV antibiotics. The IV antibiotics were given for two weeks (one week at home) and then another eight days on two broad spectrum oral antibiotics!<br /><br />After about a week Kaitlyn started with increased secretions again. So we put her back on oral ciprofloxacin. She seemed to respond nicely to the antibiotic this time and we breathed a sigh of relief! However we did run cultures also and the cultures grew heavy growth psuedomonas and heavy growth Staph. Aureus among other bugs. However since Kaitlyn seemed to be getting better we assumed that the buggies weren't infectious but rather just colonized in the lung :(<br /><br />We finished a ten day course of antibiotic at home. After which Kaitlyn was healthy for two whole days! She went from healthy and happy sitting up and acting normal to wet and junky lungs in twelve hours!! We chose not to expose Kaitlyn to all the sick kids flooding the ER late at night. I stayed up and did therapies every three hours all night last Monday night. In the morning we took Kaitlyn to ER. It would seem that she didn't appreciate being moved! She crashed down into the seventies a couple of times in ER and was having a rough time coming back up! We increased her vent settings and bled some O2 through her bi-pap (it took both to bring her up to 90% O2). Typically we don't like the O2 through the bi-pap, but Kaitlyn's PCO2 level was fine and our goal was to discontinue the O2 as soon as possible!! They accessed Kaitlyn's port and began IV antibiotics right away. I'm glad that they did. She was running a high fever and we believed that she probably had something bacterial as nobody else in our house was sick.<br /><br />Because Kaitlyn was a little unstable she made the nurses and ER doc a little nervous I think. They decided to send her to PICU. We have not been to PICU for an illness in over a year and a half. As it turns out PICU was an absolute nightmare!!! H1N1 EVERYWHERE!! And me without my vaccine yet...EEEPPPPS! Needless to say I was washing my hands like crazy! As luck would have it, Kaitlyn responded well to treatments and we got rid of the O2 through the bi-pap the next day. We did cough her with O2 for a day longer. X-rays showed a pneumonia in Kaitlyn's upper right lung. She also had some infiltrates throughout the lungs (areas looking mucousy/wet).<br /><br />After spending one night in PICU we were able to move Kaitlyn to regular floor. This way she could be more closely followed by doctors and specialists that know our daughter best! Also Kaitlyn's pediatrician works in our children's hospital. This is great for us, as any time we are hospitalised we are admitted under our pediatrician's name :) Not a soul knows Kaitlyn like her pediatrician, and while she is not an SMA doctor we love her as she is willing to work with us and listen to our input!! As you know this is huge for our SMA families....just having someone who will listen to and try some of our unconventional ideas :P<br /><br />Since last Tuesday we have been waiting for Kaitlyn to show some signs of improvement! Her fever is gone, she is not needing O2 in any form and her bi-pap settings are back to normal. But...she is still junky! We took an x-ray yesterday that showed the pneumonia in the upper right lobe has cleared (there's no consolidation anymore). But there are infiltrates throughout the lungs and appears in particular to have spread into the lower right lung! URG!!! In a consult with Infectious Disease yesterday, they confirmed that Kaitlyn is on the right antibiotics to cover the bugs she has...so why is she still sick?? Today we have to redo cultures and they also want to redo her H1N1 test and add some plasma tests (?). You know I almost hope that they find something viral!!! Crazy how we used to wish for Kaitlyn NOT to get a virus! Throw in a couple of super bugs and all of a sudden we are praying for the viral CRAP!!<br /><br />Hoping my next post is from home...Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com3tag:blogger.com,1999:blog-3500850714657771223.post-58914522058443750772009-11-11T22:57:00.009-04:002009-11-15T00:23:38.455-04:00New Ramp!!<div><div><div><div><div><div><div><div><div><div>We bought our new home and moved in back in August. The first thing we knew that we had to somehow make happen was wheelchair accessibility for our new abode. For three months now Kaitlyn's Wheelchair/medical stroller has had to live outside in our van :( Banished alongside the stroller was our back-up cough-assist and true sine inverter (needed to run said device). This equipment is very expensive and difficult to procure. With snow and cold weather threatening to arrive we have been worried about the equipment being stored in our van. </div><div> </div><div>Tim spoke to our Social Worker at our children's hospital about needing a ramp and asked if we could get any help building. Our social worker wanted to know if we needed help building or funding supplies. We of course said that we would be happy with whatever help we could get! Tim and I were hoping for some guidance and expertise in how to build an accessible ramp. A few short weeks later our social worker told us that we would have a couple of contractors come out to assess our needs for a ramp. We had high hopes that the pair would give us some expert advice on how/where to build our new addition. </div><div> </div><div>Then two weeks ago we had a call from the contractor saying that we would be receiving supplies to build a ramp and they would be out shortly to begin the build. Before the call we had no clue that any arrangements had been made for a ramp to be built!! We knew that our social worker had been looking into getting some funding for a ramp, but we had no idea that the funding had been found! </div><div> </div><div>Our supplies arrived a couple of days later and the contractors the day after! They were wonderful! They were even kind and patient with our boys, who just HAD to be out there observing their every move :) The contractors were here for three days and finished our new ramp :) </div><div> </div><div>It is so hard for us to put into words how we feel about having this ramp built for us! Unless you have a child like Kaitlyn and truly understand ALL that she entails each and every day, then it would be hard for you to realize just how much a simple ramp can do to make our lives that much easier! Kaitlyn has frequent appointments at our local children's hospital, not to mention the very few family outings we get together. Taking her out of the house is a huge undertaking!</div><div> </div><div>Before the ramp we had to carry supplies out to our van and load up Kaitlyn's stroller piece by piece! This took several trips back and forth to the house lugging everything out by hand. When Kaitlyn travels out of the house we have to take ALL of her equipment with us. She is a vent dependant child with an extremely unstable airway! The last step was to carry Kaitlyn out in my arms, climb into our non-accessible mini-van, work my way around her stroller and get her settled without breaking any of her limbs! Kaitlyn is a big girl and carrying her in tight spaces is becoming increasingly difficult!! </div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sv95SoKBdcI/AAAAAAAAA0c/ZQpOvRK6F3c/s1600-h/IMG_1102.JPG"></a> </div><div>With the ramp we can load up Kaitlyn's stroller, supplies, machinery and angel baby :) Then all we have to do is stroll her out, down the ramp and into the van! This is just so much easier. Especially in the bad weather!! It is also so much safer both for Kaitlyn's equipment and for Kaitlyn :) With the ramp, an outing of a few minutes can be done without a second thought, when without the ramp it wasn't even considered. This is a huge plus for a little girl whose first words in the morning are "go, go, go"!</div></div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/Sv95RgWTFMI/AAAAAAAAAz8/dYBBZoO9wfw/s1600-h/IMG_1104.JPG"></a> </div><div>Supplies for our new ramp :) </div><div> </div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sv95SoKBdcI/AAAAAAAAA0c/ZQpOvRK6F3c/s1600-h/IMG_1102.JPG"></a> </div><div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sv94dXniUpI/AAAAAAAAAzU/svQnJEGKxzo/s1600-h/IMG_1067.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5404170523819266706" border="0" alt="" src="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sv94dXniUpI/AAAAAAAAAzU/svQnJEGKxzo/s400/IMG_1067.JPG" /></a></div><div> </div><div> </div><div><a href="http://4.bp.blogspot.com/_aPWLsmM4yoE/Sv94dlwg3lI/AAAAAAAAAzc/funFM6DtmfM/s1600-h/IMG_1068.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5404170527615016530" border="0" alt="" src="http://4.bp.blogspot.com/_aPWLsmM4yoE/Sv94dlwg3lI/AAAAAAAAAzc/funFM6DtmfM/s400/IMG_1068.JPG" /></a></div><div> </div><div>Supplies unloaded....ready for the contractors!!</div><div> </div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sv94eFOb9yI/AAAAAAAAAzk/O9v8HpdUL4E/s1600-h/IMG_1069.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5404170536062023458" border="0" alt="" src="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sv94eFOb9yI/AAAAAAAAAzk/O9v8HpdUL4E/s400/IMG_1069.JPG" /></a></div><div> </div><div>First snowfall of the winter season covering what was accomplished Day 1 of the build. </div><div> </div><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/Sv94ebIfRrI/AAAAAAAAAzs/gEtKhqC4tjE/s1600-h/IMG_1074.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5404170541942654642" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/Sv94ebIfRrI/AAAAAAAAAzs/gEtKhqC4tjE/s400/IMG_1074.JPG" /></a></div><div> </div><div>Our finished ramp!!! :O) </div><div> </div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/Sv94ei07OrI/AAAAAAAAAz0/al01YG3z0_8/s1600-h/IMG_1103.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5404170544008084146" border="0" alt="" src="http://3.bp.blogspot.com/_aPWLsmM4yoE/Sv94ei07OrI/AAAAAAAAAz0/al01YG3z0_8/s400/IMG_1103.JPG" /></a></div><div> </div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/Sv95RgWTFMI/AAAAAAAAAz8/dYBBZoO9wfw/s1600-h/IMG_1104.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5404171419516081346" border="0" alt="" src="http://3.bp.blogspot.com/_aPWLsmM4yoE/Sv95RgWTFMI/AAAAAAAAAz8/dYBBZoO9wfw/s400/IMG_1104.JPG" /></a></div><div> </div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sv95R2M85DI/AAAAAAAAA0E/5hDyAN4oWlw/s1600-h/IMG_1105.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5404171425382458418" border="0" alt="" src="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sv95R2M85DI/AAAAAAAAA0E/5hDyAN4oWlw/s400/IMG_1105.JPG" /></a></div><div> </div><div><a href="http://4.bp.blogspot.com/_aPWLsmM4yoE/Sv95SCSajpI/AAAAAAAAA0M/Oo0jiAVt5yc/s1600-h/IMG_1106.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5404171428626599570" border="0" alt="" src="http://4.bp.blogspot.com/_aPWLsmM4yoE/Sv95SCSajpI/AAAAAAAAA0M/Oo0jiAVt5yc/s400/IMG_1106.JPG" /></a></div></div><div> </div><div>Some recent pics of the kids:</div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sv94dXniUpI/AAAAAAAAAzU/svQnJEGKxzo/s1600-h/IMG_1067.JPG"></a> </div><div><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/Sv95SbTXq4I/AAAAAAAAA0U/BuBs2QtyM4w/s1600-h/IMG_1099.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5404171435341491074" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/Sv95SbTXq4I/AAAAAAAAA0U/BuBs2QtyM4w/s400/IMG_1099.JPG" /></a></div><div> </div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sv95SoKBdcI/AAAAAAAAA0c/ZQpOvRK6F3c/s1600-h/IMG_1102.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5404171438791947714" border="0" alt="" src="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sv95SoKBdcI/AAAAAAAAA0c/ZQpOvRK6F3c/s400/IMG_1102.JPG" /></a></div><div><br /><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/Sv956M6FmhI/AAAAAAAAA0k/cOsF5gEL4-c/s1600-h/IMG_1081.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5404172118672120338" border="0" alt="" src="http://3.bp.blogspot.com/_aPWLsmM4yoE/Sv956M6FmhI/AAAAAAAAA0k/cOsF5gEL4-c/s400/IMG_1081.JPG" /></a></div></div></div></div></div></div></div></div></div>Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com1tag:blogger.com,1999:blog-3500850714657771223.post-87199057245164543622009-11-02T23:35:00.003-04:002009-11-03T00:16:44.051-04:00Feeling Better AgainKaitlyn has been feeling much better the past two days! We are back to normal bi-pap times and secretions are much more manageable. I can finally carry her around on my shoulder again and boy is she taking advantage!!!<br /><br />Kaitlyn goes to get her TLSO tomorrow. A TLSO is a body brace (like a rigid corset) that hugs Kaitlyn's torso so that she will be able to sit up without slumping all over!! It should help make it easier for Kaitlyn to breathe and make positioning her easier. It will help us keep Kaitlyn's back straight to avoid or prolong any surgeries to correct displacement in the spine! Currently Kaitlyn has NO noticeable curvature of her spine :) Our OT/PT is finally convinced that she needs the additional support when they tried her in the new floor sitter they are having made for her! She just collapsed into the seating...they have never dealt with a child with such low tone before! We are all learning as we go.<br /><br />We are also trialing a couple of options for drive controls for a powerchair tomorrow. One is the mini proportional joystick. Kaitlyn hasn't done extremely well with this joystick :( They have left it so long that now she has lost almost all function in her little hands :((( The second option we are trialling is fibre optics :) The fibre optics are little pinpoint sensors that can be placed anywhere that Kaitlyn has predictable movement. The biggest problem with driving a powerchair like this is that it could take a LOT longer to learn.<br /><br />The biggest problem by far is not having a proper chair for Kaitlyn to trial this sensitive equipment. They are having a really hard time figuring out how to position Kaitlyn's hands to give her the best function to be able to access the drive controls! Wish us luck that we can figure this all out. I am getting really tired of listening to Kaitlyn cry everytime Alex or Owen gets up and leaves the room and she cannot follow!Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com1tag:blogger.com,1999:blog-3500850714657771223.post-42542829342738425442009-10-25T07:17:00.003-03:002009-10-25T09:08:24.555-03:00Increased secretions, slow digestion....You know the drill!I was hoping our next post would be something exciting, something nice....something "normal"!! Kaitlyn has had increased secretions for the past week and a half almost two weeks. It started out like a head cold. Increased secretions were almost entirely from the nose. She has had no fever and has not been bi-pap dependant. Her spirits have been good and she has been acting normal, just extra junky.<br /><br />Well yesterday it finally happened, she stopped digesting her feeds! Friday Kaitlyn was fine, digesting fine and acting fine except for the increased secretions. Then yesterday morning I gave Kaitlyn her first morning bolus and no issues. Then I fed her again and when I went to feed her a third time she still had all of her last feed in her stomach! I knew right away what was happening! Everytime Kaitlyn gets sick now it stops or severely slows her digestion. It seems as time goes on that it is taking less and less provocation for her tummy to shut down :(<br /><br />The first thing I always do when digestion slows is I take her formula back to a base mix. Kaitlyn's normal formula contains fruit juice, fruits, supplements and her powdered formula. When she is sick and is digesting poorly we take out all of her fruit juice and fruits. We then add extra pedialyte and this usually helps her food move through her system better. So yesterday I remixed Kaitlyn's food and fed that to her. She still wasn't digesting!!! After we put Kaitlyn to bed Tim went out to get more pedialyte and we gave her straight pedialyte.....finally!! The pedialyte started moving through her. At this point she was pretty dry.<br /><br />We then gave her pedialyte and mixed in some of her bland formula. This seemed to work! Hopefully we can keep her gut working in the right direction. Thanks to the suggestions from some of the other SMA families I have a couple of things I can try if she stops digesting again!<br /><br />Her cold does seem to be getting a little worse, but she is not presenting any differently than the rest of us. We'll see how she does over the next day and decide whether or not to take her and have some cultures done. She is nowhere's near needing to be admitted unless she needs fluids!Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com3tag:blogger.com,1999:blog-3500850714657771223.post-33702168987108681012009-09-23T22:20:00.010-03:002009-09-25T09:30:09.740-03:00Home Again<div><div><div><div>Sorry for the long time between posts!! Kaitlyn got home last Friday the 18th of September. So what happened.....</div><div></div><div><br /></div><div>Kaitlyn's sputum cultures (mucus from her lungs) came back from the lab positive with both Pseudomonas and Stapholococcus Aureus bacterias! Both of these buggies are serious on their own. Not to mention hard to treat. Kaitlyn colonizes pseudomonas. This is not something that anyone with a normal respiratory system would be susceptible to growing in the lungs. Kaitlyn grows two strains that are both now resistant to the oral antibiotic that we usually use to treat pseudo at home. This medcation is really the only type of oral antibiotic effective against pseudo!!! GREAT! The Staph buggy also turned out to be a fairly resistant strain. It was the Staph that Infectious Disease figures was the cause of Kaitlyn's illness this time around. I think this is the longest illness we have dealt with so far!</div><div></div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sry0D80v0FI/AAAAAAAAAxo/R2zpsF4JOkg/s1600-h/IMG_0980.JPG"></a> </div><div>In hospital Kaitlyn was placed on two IV antibiotics to get rid of the buggies. After about two days I started asking about getting things in place so that we could take Kaitlyn home and administer the IV meds at home. At first they were telling me that there was no way that we could go home with IV antibiotics....I raised my eyebows and said that I knew for a fact that people DID go home on IV meds and fluids and even TPN when needed!!!! I was only asking for the same rights! </div><div></div><div><br /></div><div>When we are in hospital we do ALL of Kaitlyn's care. The nurses are not familiar with Kaitlyn's equipment, including her cough-assist, and especially her bi-pap. These things are not extremely complicated peices of equipment, but we would have to teach their use twice a day with shift changes and then it takes TIME to get familiar with Kaitlyn specific techniques. We usually spend a good two weeks to train our home nurses to care for Kaitlyn when she is healthy!! It's a whole new ball game when Kaitlyn is sick!!! The "rules" change...she becomes a LOT trickier to deal with. That said...we find it soooo much easier to be at home when Kaitlyn is sick but relatively stable!!! It disrupts our whole family when we have to go to hospital :o( </div><div></div><div><br /></div><div>In the end they agreed to let us home on IV antibiotics as long as our regular nursing service could arrange to deliver the meds. I did learn how to administer the meds myself, but did not take it upon myself as they took away all of our regular service. Tim and I had been working around the clock for three weeks at this point and the last thing I needed was more work!!! </div><div></div><div><br /></div><div>IV antibiotics were finished this Wednesday and Kaitlyn has been switched to two oral antibiotics. One covers her pseudomonas somewhat and the other is knocking the stuffing out of the Staph buggy :o) Our goal in leaving her on antibiotics (hefty antibiotics) is to completely knock out the Staph buggy!!!! The last thing we need is for her to colonize such a NASTY resistant bug!!! ID (infectious disease) had a hard time finding antibiotics that would cover all of the bacteria that Kaitlyn was growing in her lungs. She was even resistant to the newer generation antibiotics that they wanted to put her on!! </div><div><br /></div><div></div><div>So now we are trying to get back into our "normal" routine. It's tough for all involved, especially since Tim and I are still trying to catch up on lost sleep! We are just so glad to be back home! Here are some recent pictures of the kids. </div><div><br /><br />Kaitlyn is REALLY enjoying these kittens! She loves it when they come lay down with her. This little black and white kitty LOVES laying beside her and doesn't even budge or wake up when we turn the suction machine on!!!<br /><br /><a href="http://2.bp.blogspot.com/_aPWLsmM4yoE/Sry0DST-0lI/AAAAAAAAAxg/xyZvRCBVZg4/s1600-h/IMG_0982.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5385377222976524882" border="0" alt="" src="http://2.bp.blogspot.com/_aPWLsmM4yoE/Sry0DST-0lI/AAAAAAAAAxg/xyZvRCBVZg4/s400/IMG_0982.JPG" /></a></div><div> </div><div>Alexander loves the kitty too! This little kitten doesn't mind when they pick him up and cuddle him....he doesn't have enough sense to run :o) But seriously the kids are soooo good to him. </div><div> </div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sry0D80v0FI/AAAAAAAAAxo/R2zpsF4JOkg/s1600-h/IMG_0980.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5385377234388242514" border="0" alt="" src="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sry0D80v0FI/AAAAAAAAAxo/R2zpsF4JOkg/s400/IMG_0980.JPG" /></a></div><div> </div><div>My boys outside in their PJ's playing in our yard one weekend. Tim and I didn't have time to fight with them about getting dressed....so out they went. They'd live in PJ's if we let them ;) </div><div> </div><div><a href="http://4.bp.blogspot.com/_aPWLsmM4yoE/Sry0EcdwDqI/AAAAAAAAAxw/y-b5ECVgl6I/s1600-h/IMG_0974.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5385377242881724066" border="0" alt="" src="http://4.bp.blogspot.com/_aPWLsmM4yoE/Sry0EcdwDqI/AAAAAAAAAxw/y-b5ECVgl6I/s400/IMG_0974.JPG" /></a></div><div> </div><div>I love my diapers!! This is how I found Alex one morning, laying on top of Kaitlyn's diapers. He looked like he was sad that he no longer needs them :o) </div><div> </div><div><a href="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sry0E3FT0mI/AAAAAAAAAx4/RiwZVoFawwY/s1600-h/IMG_0966.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5385377250026967650" border="0" alt="" src="http://1.bp.blogspot.com/_aPWLsmM4yoE/Sry0E3FT0mI/AAAAAAAAAx4/RiwZVoFawwY/s400/IMG_0966.JPG" /></a></div><div> </div><div>This is Owen on his first day of school. </div><div> </div><div><a href="http://3.bp.blogspot.com/_aPWLsmM4yoE/Sry0FJ2MprI/AAAAAAAAAyA/yQwJjB1h2wA/s1600-h/IMG_0958.JPG"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5385377255063856818" border="0" alt="" src="http://3.bp.blogspot.com/_aPWLsmM4yoE/Sry0FJ2MprI/AAAAAAAAAyA/yQwJjB1h2wA/s400/IMG_0958.JPG" /></a></div></div></div></div>Kimberleyhttp://www.blogger.com/profile/11633161338734557817noreply@blogger.com2