Thursday, November 20, 2014
Day +110 Not many changes today. Katlyn continues to do well. She is trying her best to keep busy and pass the time. It's really hard for her not to think about food. She is so hungry. She had a peripheral iv placed on Friday and it was removed today, so instead of her having two separate lines, everything will be going through her port. This makes me so happy because I hate peripheral ivs. No news about anything from the scope and biopsies yet. Hopefully no news is good news. We are just so focused on the day to day and Katlyn feeling better. Her nausea and belly pain seem to be down, but in the last few days she has been having terrible migraines. They are nasty too. Tylenol does not seem to do much and morphine has been used most times. Today the morphine doesn't seem to be doing much. This picture is Katlyn learning to cross stitch. She picked it up very easily and seems to enjoy it. I also wanted to mention that I do have a group on facebook set up for Katlyn. Its called prayers for Katlyn.
Day +109 still no word back on any results from the scope yet. Katlyn is doing so good though. She is super smiley most of the time, except for moments when she gets frustrated with not being able to eat. Right now I am allowed to give her some chicken broth, and a little bit of jello, a couple crackers or pretzels. Let's just say, she has been chewing a ton of dessert gum. Her output is way down now. This is very good because by giving her gut a break we are actually getting a direct positive result. She is also currently on antibiotics which will discontinued soon, so hopefully that helps too. I think that it will be a slow process when we do start to give food again. I imagine we will slowly introduce stuff that is easy on the gut. Katlyn is doing her best to keep busy but its hard. She does get a little stir crazy now and again. We are extremely grateful to our friends Jennifer Cox and Mark Cox for making us some delicious food and showing us so much support. They were so kind to bring Katlyn some stuff to do and a ton of movies to watch. We spent a lot of time with this family in the hospital when Katlyn was a baby as their son was diagnosed with SCID as well.
Day + 108 Katlyn seems to be doing okay. Her bloodwork is starting to stabilize with the tpn and extra fluids she is getting. It is so difficult to try and explain to her why she cannot eat. She gets everything that she needs through iv and they are trying to give her gut a rest to see if maybe the break and proper nutrition helps. However, for an 8 year old it just doesn't make sense. She loves eating and thinks this is torture. I imagine it is too. Poor girl. Hopefully we get answers soon and this doesn't have to go on for long.
Day +106 So we still do not have a lot of answers about what is going on, although I believe we are getting close. They do have Katlyn re-hydrated now and she will start getting total parenteral nutrition or TPN. It looks as though Katlyn is not absorbing much from her food from whatever is going on so the TPN will allow them to give Katlyn all the nutrients, electrolytes and proteins that she needs. A feeding tube would not work for Katlyn because all the feeding would still go to the gut where there is a problem. This type of feeding bypasses the gut and goes right through her veins. This will take pressure off her too when she is not feeling good. She will get proper nutrition and she won't have to worry. We won't have to worry. She really does not have any more room to lose weight. They are also going to try and give her as many of her medications through IV as well. Yesterday Katlyn was prepping for a scope so she was unable to eat all day. This was so difficult but she did very well. She was wait listed for the procedure today so we really had no idea what time of the day she would be going. The nurse guessed it would probably be the afternoon. She did get called to go late this morning which was great so that she didn't have to wait any longer to eat and drink. The procedure itself seemed to go well, but we still have not got any information for us. We will wait. I imagine they will be able to at least tell us what they saw soon, but they did take a lot of biopsies and of course those will take time. Of all the procedures that Katlyn has ever had, I think I was most scared for this one, even though she had it before. She is in such a fragile state that it really make me nervous. She was eating pretzels and talking away about what she remembered before the procedure and them putting her to sleep, not very long after she woke up. What a little trooper. So here we are. They do tons of tests and blood work often and lots of specialist keep coming to see Katlyn. Everyone is trying to piece together what is going on. One thing that we do know for sure is that Katlyn's kidneys are full of kidney stones. So they are giving her potassium citrate to help break those up. This may be the reason for the blood last friday. I'm not really sure how long Katlyn will be hospitalized but right now I just don't care. I need them to make her healthy again. She is slowly brightening up, but I know she still has a long way to go.
So the gi specialist stopped by to let us know that katlyns small intestine and large bowel do look enflamed. They looked definitely bothered but benign. We need to wait until next week to see if the gut tests positive for a virus or anything. Hopefully it does not. One theory from her doctor is that it may be that Katlyn is not absorbing the proper nutrients to support her including healing her gut, and so we got this flare up out of control and her body doesn't even have what it need to try and heal. So with that being said, hopefully as she gets more nutrition and less irritants the gut heals and stabilizes. The hemotologist said that the situation doesnt look like gvhd to him but we will know more when the study is back. Katlyn is going to start to get most meds iv as well and some of the meds are not compatible, so unfortunately she has to get a peripheral iv placed. She is in good spirits though. She is such a trooper.
Day +104 Well it has been an extremely long and tiring day. So many tests and so many specialists. Everyone trying to answer the puzzle of what is wrong with our little girl. She did have a consult with GI and it looks like they are wanting to do a scope maybe friday to see what is going on. It can be a number of things going on including the norovirus, another virus, meds or gvhd. The night was so so long and stressful. She had moments of huge fluid loss (like over a litre) and then she would have chills. This terrified me. Her poor little body was just trembling and her teeth chattering. Each time I asked the nurse to come check on her and each time all of her vitals were fine. They did decide to stop the bicarbonate infusion for now and her blood did continue to normalize. It's still acidity but hopefully it neutralizes soon. Also her electrolytes, white blood cell count and platelets seem to be stable. Her hemaglobin was dropping but seem to be leveling out. Her coaligation has dropped since recieving the vitamin k supplement, so is possible that may have been caused by her being malnourished. I know we are in the right place but I am so sad that she has to go through this. Katlyn has been through so much. I know this is just a bump in the road and we will get to the bottom of this but it still sucks. My heart really aches for her. We try to look at the positives but it's so hard when you look at her and see her not feeling well. She was in good spirits most of the day. Also we have noticed she is coughing less today. Hoping for a restful night and hopefully an even better days tomorrow.
So the resident doctor came in for a chat about Katlyn. She was surprised that Katlyn seemed to be feeling a little better because her bloodwork is getting worse. Her blood has become acidotic. This happens for many reasons, but in Katlyns case it's probably due to extreme dehydration. She is just losing so much. So we will be starting to infuse bicarbonate to to try and neutralize Katlyns blood. Once we start we will recheck her blood in four hours to see if there is an improvement. On the plus side though all her other electrolytes seems to be normalized with the extra iv support. She is back to sassing the nurses and giving her mother and father a hard time. LOL!! I love her little smile so much. Despite a hard day, we have shared some good laughs.
Day +103 So we just met with Katlyns woderful doctor. He agrees that there is definetly something going on with Katlyn. He is going to order her some vitamin K as he suspects that Katlyn is not absorbing nutrients properly and she has become malnurished. We suspect that the norovirus is the culprit., Katlyn tries so hard to eat well and the constant belly pain, nausea and weight loss are definitely disconcerning. Sh is in the right place though. I hate that she is in the hospital, but I feel great relief knowing they will get to the bottom of this and she will be okay. By the time we go here yesterday evening it was obvious to us that she had become very dehydrated. Usually Katlyn loses a lot of fluid anyway because of the norovirus, but she started antibiotics on Saturday, and she is losing way too much fluid. There is no way she can eep up with this. I can see by looking at her input and output that she needs to be supported by iv hydration for sure. Words cannot even come close to expressing how scared I am right now. I have been trying to stay focused on all of the positive but it is so hard when she feels so unwell. We have had so many sleepless nights lately worried about her.. I just want our baby girl to feel better. I trust the team here. I know they will take good care of her.
Day +102 Katlyn did remain stable through the weekend but it has become apparent to us and the doctors that something is wrong and she needs to be looked at by the team at the iwk. For starters there is something going on either with her kidneys or bladder and we need to get to the bottom of that. She does seem quite a bit better in regards to that. She no longer has abdominal pain but there is still blood present. Secondly we have been working very hard to maintain Katlyns weight and I honestly feel as though she does eat well. There may be something else going on. Some of the bloodwork suggested she may have a vitamin k deficiency which would mean she is not absorbing fat. I know they will get to the bottom of it. She has dropped down to 19.5 kg and there is just nothing left for her to lose. This terrifies us. Johnathan and I havent hardly been sleeping and its so hard to mask the worry with a smile for Katlyn. I have no idea how long she will be in the hospital but I feel relief knowing they are going to look after her. She is wasting away on us. I know that she should start feeling better but she has little interest in doing anything because of all the nausea. I doubt we will know much today but hopefully we will know a little tomorrow.
Day +100 so we spent the day in the hospital today with Katlyn. The local pediatrician called too check on Katlyn. He asked how her urine was and I told him that it may be a little better but still red. I also then let him know that Katlyn was having left hand abdominal pain. He asked us to bring her in for some repeat bloodwork and an ultrasound. So off we went. When we got there they were ready to admit Katlyn but I explained that we would have to wait and see all the test results and discuss things with her primary physicians. A hospital stay would have to be in Halifax I imagine. When it comes to Katlyns care we always need to error on the side of caution that why we didn't hesitate to bring her straight to the hospital when we had a lot of concern ourselves. You just don't want too many cooks in the kitchen. So all the tests were about the same or a little improved. Basically not saying much about what is going on with Katlyn. We have ruled a lot of things out but the worry remains.
Day +99 so we just got home from spending the afternoon at the hospital in fredericton. Katlyn was peeing blood which is super scary. The doctors first suspicion was her platelets so we were prepared for her needing a transfusion but to our surprise the platelets were higher then they were on Wednesday. They are still not in the normal level , but they are coming up, which is encouraging. So next we looked at liver function and got a urine culture and checked katlyns coagulation, which is the process of blood clotting. Katlyns number does indicate that she will bleed easily. Also her vitamin k was low, which I'm scared means that she is not absorbing fat but it would explain why she keeps losing weight even though she eats. Also Katlyn did test positive for bacteria in her throat, from a sample that was taken on Wednesday. So we have started her on antibiotics and have been given direction to bring her home and keep our eye on her. If She starts bleeding from somewhere else (and this really scares me) to bring her back. Otherwise we are told to bring her in on Monday for repeat bloodwork. Meanwhile the culture might grow and show an infection. Katlyn gets lots of fluid so it's unlikely that, but it may be an infection, gvhd, medication or something else. We need prayers! !
Day +98 Katlyn had an appointment at the IWK yesterday and most things were about the same or even better. It really is amazing where you think about her progresss from week to week. This time the doctor was lucky enough to see Katlyn smile. The past two weeks have been a little hard. We were heading in the right direction, but had a few days backwards and those days were pretty scary. Katlyn hates taking liquid medicine, so we changed her zantac from the liquid to the pill form, but in order to do so we had to go up or down on dose. We went down on dose, which seemed to be going pretty good. However we also needed to change her MMF to liquid suspension. Almost immediatley Katlyn became very ill. She always has problems with her belly. She is always nauseous, but for a few days she seemed worse. She didn't want to eat or drink anything. We still pushed her very hard, but I literally had to sit with her all day long pushing her. We felt so bad for her. It was pretty scary for us because we didn't know what was going on. So I was sitting here thinking it all over. What has changed over the past few days? What has changed in the past couple of weeks? I dawned on me that when we switched Katlyn's tacrolimus to liquid suspension, I can remember her having this awful chest pain immediatley and the zantac is what ended up relieving that pain. So I decided to go back to the liquid zantac, and upping the dose. Well, that night Katlyn woke up in the middle of the night and snuck in the refrigerator. LOL!!! She had a pickle and half a juicebox. The next morning I was overjoyed to see her little smile and sense of humor back, I don't know for sure if that was what the problem was, but it seemed to work!!! So yesterday speaking with her doctor, we upped the zantac even more to keep it in pill form, but hopefully the higher dose is just more protection for her little belly. Another problem we are having is that Katlyn keeps losing weight. She does have an appetite and she is eating well, but the norovirus is taking its toll on her and we supsect she is not absorbing nutrients from her food like she should be. So we will be trying a couple of new things. Its very tricky to give Katlyn something for her belly because we don\t want it to interfer with the absorption of her medications, or making her bowels lazy. This could result in keeping the norovirus in, or anything else bad in for that matter. So we will be trying Kaopectate to offer her some releif and simethicone as a second or primary source. I\m going to play around with the dosing a bit and see if we cannot find a way to make our girl more comfort. The Kaopectate will coat the gut, so hopefully Katlyn will absorb her nutrients better as the gut heals a bit. gvhd of the gut is not suspected at this time. We did have a flare up of skin gvhd as I mentioned in my last update, but it cleared up nicely with the steroid cream. So this week we will start to wheen her prednisone again. This is such a slow process. She had started at 50 mg daily and now we are down to 20 mg. We go down 5 mg/ week, so it is a long process. This medication was very effective for fighting the gvhd, but it comes with some nasty side effects. It makes her very nervous and stressed out. This poor girl almost has no fingernails left. We will also start to wheen her mmf, which is so exciting. the immune supression drugs are very hard on her little body. Wheening both of these drugs are a little risky because either can cause a flare up of gvhd, but we will watching Katlyn very closely. By December she should be done with MMF, and then in February we should start to wheen the tacrolimus. As you wheen these two medications, her immune system will slowly be turned on. Katlyn does still have Rhinovirus as well. Its hard on her, and its now been at least a month of being sick with it. However her lungs are clear. She is coughing a lot and of course the runny nose, but we are managing her symptoms well. Katlyn's platelets were up a little bit this time, which was a releif. She is still not in the normal range, but hopefully she will be soon. She is not at a dangerous level either. Katlyn's ESR was elevated this time, and its unclear exactly why. The only problem area seems to be her gut. The doctor doesn't think its gvhd, but the norovirus. Again, we will be watching this very closely as well. I\m thinking, it may be possible that those few days that she was really unwell may be the cause. I really don't know, but maybe the gut was super irritated with the extra medication and less protection. We will see. So Katlyn will have her IVIG next week in Fredericton, and the following week in Halifax. She will also get her pentamidine in two weeks. The doctor mentioned we might try the septra again at some point, and I explained that I reached out to other parents with Katlyn's condition, and it seems as though many have the same sensitivity. After these two appointments we will then go to visiting the IWK every two weeks. Her IVIG infusions will go from weekly to monthly. All of this is great news!! So hopefully we keep heading in the right direction and Katlyn is able to fight this norovirus and rhinovirus. Hopefully by wheening these drugs the reverse effects lessen and she starts getting some relief. I pray that the medication we are trying for her belly works well and that hopefully she stops losing weight. Please continue to keep our sweet angel in your thoughts and prayers.