Happy Mother's Day

Wow, 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!

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!

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!

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.

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.

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!!    

Kaitlyn and Daddy (with Ernie) having a cuddle in the rocking chair.

Kaitlyn's new toothless smile :)

Kaitlyn having a cuddle with Mama! She doesn't exactly fit in my lap anymore!!

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

My WILDMAN!!! Kaitlyn's twin Alexander :)

Hypercalcemia

Last 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.

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.

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 ;)

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 :(

Some recent shots of the kids! Sorry I haven't posted any in so long :(

Kaitlyn 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 :)

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 :)

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!!!

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.

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 :(

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!

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!

Please keep Kaitlyn in your thoughts as we try to figure out what is going on inside her little body!

Home 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.

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!

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 ;)

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 :)

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.

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 :)

Feeding 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.)!

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)!

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!

Here's the journal of our past week:

November 16

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!!!

November 18

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 :)

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!

November 19

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!

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!!!

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!!

G-J Tube Surgery

Kaitlyn 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!!

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!!

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.

Here's a bit of a journal of the past few days:

November 3

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 :(



November 6

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... :) 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.

November 8

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!



November 13

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!!

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!!

Bacteremia X 2 and GJ Surgery

Oh 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.

SO besides the second bacteremia what's been going on....we left off with Kaitlyn needing an NJ tube placed....

Here's a bit of a journal from the past week and a half:

October 20

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! She's on IV Pantoprazole and IV Odansetron.
 
October 22
 
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!  
 
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.
 
October 24
 
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!!
 
October 27
 
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!).


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!

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!

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 :)

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!

October 29
 
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...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.
 
November 1
 
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.



Well that pretty much catches us up to date for now! Will try to do another post in a few days.