Kaitlyn 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!!!
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.
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.
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!
Monday, November 2, 2009
Sunday, October 25, 2009
Increased 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.
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 :(
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.
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!
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!
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 :(
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.
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!
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!
Wednesday, September 23, 2009
Home Again
Sorry for the long time between posts!! Kaitlyn got home last Friday the 18th of September. So what happened.....
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!
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!
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(
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!!!
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!!
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.
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!!!
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.
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 ;)
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)
This is Owen on his first day of school.
Saturday, September 12, 2009
In Hospital
Where to begin....
Kaitlyn had her Port-a-cath surgery August 27th and like I said everything went just fine! She came home and had a slight increase in secretions which is normal after being intubated. After about 3-4 days she is usually back to her baseline. By the Monday (four days) post surgery Kaitlyn's secretions were on the rise and not getting any better. She also started with a bit of a cough on Monday. By Tuesday she was bi-pap dependant, but not because she was desatting. She would go into fits of continuous coughing every time we took her off of bi-pap. Secretions were still on the increase and we thought that perhaps she was getting a cold. By Wednesday post surgery Kaitlyn spiked a fever of forty. Considering she just had her port placed we worried about infection in her blood so we brought Kaitlyn into ER to have them run some cultures and figure out what was wrong.
The cultures from ER all came back negative and in the meantime we had taken Kaitlyn back home to care for her. So from Wednesday until the following Monday (1 week since onset of symptoms) she still had fever that would spike to forty every time we took her Tylenol away and she was still obviously junky and sick! On Monday (Labour Day) we took Kaitlyn into ER again as she obviously wasn't getting any better. She had even come down with a new issue of not digesting her feeds very well. Kaitlyn was started on Ciprofloxacin as it is the antibiotic of choice due to her colonization of a particularly nasty bacteria pseudomonas.
After starting an antibiotic Kaitlyn usually responds very well to treatment. Within a couple of days we can witness a remarkable change in her symptoms. This time after five days of antibiotic treatment in our home she still wasn't getting better. She was only digesting about 1/3 her normal volume of fluids. We also had to take Kaitlyn's normal formula down to a base mix, which means that she was getting a lot fewer calories and less of all other nutrients. We did this as Kaitlyn won't digest her feeds otherwise. So we brought Kaitlyn back into ER yesterday (Friday) as we really felt that she needed IV antibiotics and IV fluids.
Our stay in ER was really ridiculous! They kept us there for a total of six hours! SO much for her protocol!!! Five hours after waiting around ER the attending pediatrician from the floor told us that they would admit us for the night, but that they didn't want to change any of her meds. and they just wanted to observe her through the night!!! I told the physician that we've BEEN observing her or the past five days at home and she is not getting any better. I said that if I wanted to observe her for one more night then I would have kept her at home!!! There was a resident shadowing the physician and I thought his eyes were going to pop out....hehehehe!! Long story short they called Kaitlyn's pediatrician who is in charge of one of the teams at our hospital and whom Kaitlyn is always admitted under!! She told them to start the IV meds. but left the fluids up to them. So IV meds were started Friday night and fluids were not.
This morning (Saturday) Kaitlyn is about the same. Because they didn't start the fluids like we had wanted she was pretty dry...so she sounded great when the nurses listened to her. This as we know can be dangerous as if she gets too dry we may not be able to mobilise the junk in her chest to be able to get it out! When Kaitlyn's pediatrician came in to see her this morning she wanted her started on IV fluids. They don't want to give her much, just enough to keep her better hydrated so her secretions won't be so thick!
Overall I think that we needed to be in hospital and now that we are here she will be followed properly so that we can figure out how to keep her from getting sick because of pseudomonas. We may have to start some sort of preventative regimen in order to keep her healthy! Oral cipro alone doesn't seem to be working for her anymore. I'm glad that she will be followed by Infectious Disease from now on...we have been asking for this for some time now! Infectious Disease wants to leave her on IV cipro until they can figure out exactly what it is Kaitlyn seems to be culturing and then hopefully we can check for sensitivities and get her on one or more antibiotics that will knock those buggies out of her!!! Infectious Disease also wants to run a host of other tests (not the standard run of the mill). I am much happier today knowing that they are finally going to DO something to help.
I have observed today that Kaitlyn's tidal volumes are pretty low (60-80) depending on her leak!! That's pretty low for a child her weight. I have also noticed that she is paradoxical breathing while on her vent, and this shouldn't be the case. So far her blood gases are good, but we may have to increase her pressure settings to make her more comfortable so that she isn't having to fight so hard to breathe!!! No wonder she has been sleeping almost 24/7 at home! I don't know how long she has been breathing this way either...I hope not long. I always wonder how much I fail to pick up on when we are home...as I have more responsibilities at home and more distractions. When we come into hospital Kaitlyn is my number one concern as I know my boys are being WELL cared for (Thanks to Grammy and Grampy!!!).
I'll keep everyone posted on how we make out! Right now we are where we need to be!!
Kaitlyn had her Port-a-cath surgery August 27th and like I said everything went just fine! She came home and had a slight increase in secretions which is normal after being intubated. After about 3-4 days she is usually back to her baseline. By the Monday (four days) post surgery Kaitlyn's secretions were on the rise and not getting any better. She also started with a bit of a cough on Monday. By Tuesday she was bi-pap dependant, but not because she was desatting. She would go into fits of continuous coughing every time we took her off of bi-pap. Secretions were still on the increase and we thought that perhaps she was getting a cold. By Wednesday post surgery Kaitlyn spiked a fever of forty. Considering she just had her port placed we worried about infection in her blood so we brought Kaitlyn into ER to have them run some cultures and figure out what was wrong.
The cultures from ER all came back negative and in the meantime we had taken Kaitlyn back home to care for her. So from Wednesday until the following Monday (1 week since onset of symptoms) she still had fever that would spike to forty every time we took her Tylenol away and she was still obviously junky and sick! On Monday (Labour Day) we took Kaitlyn into ER again as she obviously wasn't getting any better. She had even come down with a new issue of not digesting her feeds very well. Kaitlyn was started on Ciprofloxacin as it is the antibiotic of choice due to her colonization of a particularly nasty bacteria pseudomonas.
After starting an antibiotic Kaitlyn usually responds very well to treatment. Within a couple of days we can witness a remarkable change in her symptoms. This time after five days of antibiotic treatment in our home she still wasn't getting better. She was only digesting about 1/3 her normal volume of fluids. We also had to take Kaitlyn's normal formula down to a base mix, which means that she was getting a lot fewer calories and less of all other nutrients. We did this as Kaitlyn won't digest her feeds otherwise. So we brought Kaitlyn back into ER yesterday (Friday) as we really felt that she needed IV antibiotics and IV fluids.
Our stay in ER was really ridiculous! They kept us there for a total of six hours! SO much for her protocol!!! Five hours after waiting around ER the attending pediatrician from the floor told us that they would admit us for the night, but that they didn't want to change any of her meds. and they just wanted to observe her through the night!!! I told the physician that we've BEEN observing her or the past five days at home and she is not getting any better. I said that if I wanted to observe her for one more night then I would have kept her at home!!! There was a resident shadowing the physician and I thought his eyes were going to pop out....hehehehe!! Long story short they called Kaitlyn's pediatrician who is in charge of one of the teams at our hospital and whom Kaitlyn is always admitted under!! She told them to start the IV meds. but left the fluids up to them. So IV meds were started Friday night and fluids were not.
This morning (Saturday) Kaitlyn is about the same. Because they didn't start the fluids like we had wanted she was pretty dry...so she sounded great when the nurses listened to her. This as we know can be dangerous as if she gets too dry we may not be able to mobilise the junk in her chest to be able to get it out! When Kaitlyn's pediatrician came in to see her this morning she wanted her started on IV fluids. They don't want to give her much, just enough to keep her better hydrated so her secretions won't be so thick!
Overall I think that we needed to be in hospital and now that we are here she will be followed properly so that we can figure out how to keep her from getting sick because of pseudomonas. We may have to start some sort of preventative regimen in order to keep her healthy! Oral cipro alone doesn't seem to be working for her anymore. I'm glad that she will be followed by Infectious Disease from now on...we have been asking for this for some time now! Infectious Disease wants to leave her on IV cipro until they can figure out exactly what it is Kaitlyn seems to be culturing and then hopefully we can check for sensitivities and get her on one or more antibiotics that will knock those buggies out of her!!! Infectious Disease also wants to run a host of other tests (not the standard run of the mill). I am much happier today knowing that they are finally going to DO something to help.
I have observed today that Kaitlyn's tidal volumes are pretty low (60-80) depending on her leak!! That's pretty low for a child her weight. I have also noticed that she is paradoxical breathing while on her vent, and this shouldn't be the case. So far her blood gases are good, but we may have to increase her pressure settings to make her more comfortable so that she isn't having to fight so hard to breathe!!! No wonder she has been sleeping almost 24/7 at home! I don't know how long she has been breathing this way either...I hope not long. I always wonder how much I fail to pick up on when we are home...as I have more responsibilities at home and more distractions. When we come into hospital Kaitlyn is my number one concern as I know my boys are being WELL cared for (Thanks to Grammy and Grampy!!!).
I'll keep everyone posted on how we make out! Right now we are where we need to be!!
Sunday, August 30, 2009
Port-a cath....Check!
Kaitlyn had her port-a-cath placed this past Thursday! She made out fantastic!! Her surgery took about two hours and she was taken straight to PICU afterwards. We wre allowed into PICU before they extubated her. I wanted to be the first to assess her before they pulled the intubation tube. She was starting to wake up, looked good and lungs sounded clear so we went ahead and pulled the tube! We put her right on bi-pap and she maintained sats of 100% (perfect). Overall this surgery has been one of our easiest :o) She had a bit of discomfort for the first couple of days from the incision in her chest and the cut down on her neck, but nothing that couldn't be managed with a little bit of tylenol.
Because Kaitlyn has a history of blood clots (in both groins...both venous and arterial!!) she will need to remain on anticoagulation meds for as long as she has an indwelling catheter! It seems as though this may be the toughest part of placing the port for Kaitlyn. The haemotologist has her on warfarin to extend her clotting time to prevent clots forming around her indwelling catheter. For the first 24 hours warfarin acts as a coagulant instead of an anticoagulant!!! So we had to have Kaitlyn back on Enoxaparin injections. We were allowed to bring her home Friday night, but only on a pass. They couldn't discharge her properly as they needed to check her INR levels Saturday and the labs aren't open on th weekend for outpatients. When they checked her INR levels (to see what her clotting rates were) her level was 8!!!!! They want her level to read between 1.5 and 2!! Crazy. She had to have a dose of oral vitamin K through her G-tube and we had to stop both the Enoxiparin and the warfarin for Saturday night. Then we got to come home Saturday night again on pass from the hospital as we had to take Kaitlyn back into the hospital to have her levels checked again Sunday morning! Kaitlyn's INR level was 1.6 Sunday morning which is exactly where we want her.
This also means that we were finally discharged from hospital and Kaitlyn is back on the warfarin. We have to have her levels rechecked on Tuesday and I'm hoping that her levels are fine by then too. Once she is regulated on the warfarin she will only need once a month checks to make sure that her levels are fine. Her levels shouldn't change too much from day to day as Kaitlyn's diet never changes. The only time we will have to have her levels checked more often would be when she is ill or when she is taking an antibiotic.
Anyway we are thrilled with how she has done so far and are hoping she continues to do well with this port! It sure will make things easier for her when she needs venous access!
Because Kaitlyn has a history of blood clots (in both groins...both venous and arterial!!) she will need to remain on anticoagulation meds for as long as she has an indwelling catheter! It seems as though this may be the toughest part of placing the port for Kaitlyn. The haemotologist has her on warfarin to extend her clotting time to prevent clots forming around her indwelling catheter. For the first 24 hours warfarin acts as a coagulant instead of an anticoagulant!!! So we had to have Kaitlyn back on Enoxaparin injections. We were allowed to bring her home Friday night, but only on a pass. They couldn't discharge her properly as they needed to check her INR levels Saturday and the labs aren't open on th weekend for outpatients. When they checked her INR levels (to see what her clotting rates were) her level was 8!!!!! They want her level to read between 1.5 and 2!! Crazy. She had to have a dose of oral vitamin K through her G-tube and we had to stop both the Enoxiparin and the warfarin for Saturday night. Then we got to come home Saturday night again on pass from the hospital as we had to take Kaitlyn back into the hospital to have her levels checked again Sunday morning! Kaitlyn's INR level was 1.6 Sunday morning which is exactly where we want her.
This also means that we were finally discharged from hospital and Kaitlyn is back on the warfarin. We have to have her levels rechecked on Tuesday and I'm hoping that her levels are fine by then too. Once she is regulated on the warfarin she will only need once a month checks to make sure that her levels are fine. Her levels shouldn't change too much from day to day as Kaitlyn's diet never changes. The only time we will have to have her levels checked more often would be when she is ill or when she is taking an antibiotic.
Anyway we are thrilled with how she has done so far and are hoping she continues to do well with this port! It sure will make things easier for her when she needs venous access!
Saturday, August 22, 2009
Settled!!
We are almost completely moved into our new home!! The kids are loving it :o) The boys are spending time running in and out of the house, and Kaitlyn is even getting outside more. Just not on days that are too hot! We still need to figure out some way to build a ramp!! We cannot bring her medical stroller into the house! This is a huge pain as it is a good spot for her to sit sometimes :o(
Our two new additions are settling in just fine :P They are quite the household terrors now! In case anyone missed it...we now have two new kittens in our house! Owen and Kaitlyn are smitten!!! Alex just wants to put the sleeper hold on them :P Poor Kittens!
Kaitlyn is scheduled for surgery for 8am on the 27th of August! We only decided this the beginning of August, and as always our hospital made room for our girl!! They seem to really love her there :o) Our surgeon is the best and we have full confidence in him. He won't take her into surgery before making sure that he has a particular team in place for surgery, anaesthesia, and PICU!!! We love him! Kaitlyn is having a Port placed. A port-a-cath is a tiny medical appliance that is placed under the skin. A catheter connects the port to a vein. The port then sits just under the skin and can be palpated and used for central venous access. What does this mean for Kaitlyn? It means that Kaitlyn would never need to feel another needle poke! A blessing!! The skin over the port can be frozen with a gel; then a needle would access her port without her ever needing to feel another poke.
This will save us a lot of worry!! We will never have to worry about blood work ever again. We will finally be able to have Kaitlyn's blood drawn for genetic testing for a blood disorder!! (As she develops blood clots). It will be a huge relief when the port is placed and it is all said and done.
Our two new arrivals!! Introducing Blacker (or Blackie) and Spider!!
Owen learning to play with his new Kitty :o)
Spider is a little more timid...or is it SMART!! hehehe
Looks like Owen is doing a good job. Kitten is Smitten :o)
Kaitlyn in her new home.
Owen showing Kaitlyn Blackie!
Spider is coming around :o)
The Lawn Mower Parade :oD Around and around and around!!! They just wouldn't stop that night!!!!!!!!!!
Sunday, August 9, 2009
Our New Home
We spent the weekend days at our new home!! YAY! The kids ALL love it there! On Saturday I think we were at our house for a total of about twenty minutes before there was a knock at the door. A neighbour boy (eight years old) had heard tell we were moving in and had children :o)Then as I'm walking from kitchen to back deck to check on the kids....what do I see leaning against my house peering into my kitchen?? A big golden retriever dog...wagging her tail and obviously very used to my new home!! She didn't seem to mind that I didn't look/smell like the old owners!! She was very friendly and (like all goldens) lo ved the attention from the kids :o) When we bought our house we had no idea that the price included a neighbour boy and another neighbour's dog!!! Both kid and dog spent the entire afternoon with us :o)
It's funny how negatives about a potential house can take a backseat to all the positives you are focusing on. There are a few things about this new house that will need to be upgraded...some fairly soon and others will have to wait a couple to a few years! The kitchen sink is aweful!!! Pretty grungy looking and very scratched up. One of those sinks you look at and cringe at the thought of having to do dishes in it...not to mention Kaitlyn's things!!! The main bathroom needs to be redone (but this will have to wait). It is serviceable, but the tub does have a couple of chips in it :o( There is a carpet in the master bedroom that I somehow hadn't noticed when we viewed the house!! And the carpet is REALLY grungy!! It's one of those carpets, it's so aweful that we might have to rip it up and walk on the plywood boards for now until we can afford some decent flooring (NOT CARPET!!!!!). The finished rooms in the basement need upgrading, but can wait. there are carpets in the living room and dining room that I would eventually like removed.
In the backyard I found a wonderful pot-bellied stove :o) I really like these little stoves. They are great for outdoor social gatherings and just fun for the family on summer nights! The kids are going to love lighting it up for the first time :o)
Here's Kaitlyn just waking up from her first nap in our new home :o)
Gee.....Wonder what woke her up?? hehehe Introducing the neighbour boy :o)
Kaitlyn's new pet!! She LOVES this dog!! Wonder why??
The view of the ocean!
The neat little pot-bellied stove nestled in our backyard. Can't wait to light it up!
Subscribe to:
Posts (Atom)
