Monday, October 27, 2014
Day +88 Talk about a stressful day. So last night We noticed a rash on Katlyn's arms. It looked all too familiar. Katlyn absolutely hates when we put cream on her at all, but we fought with her to put some steroid cream on. I could tel just looking at the rash, it was a serious matter. So we took pictures and put the cream on and went to bed. So neither Johnathan or I barely slept all night because of this rash. The worry was real. This morning when I woke up the rash was still there but actually had improved. I immedietly sent the doctor a message letter her know about the rash and comparison pictures from last night and this morning. Then I paced the floor. Johnathan was at work at the time. I kept checking Katlyns temperature, and although she never reached 38 I kept checking. It was pretty warm in here, and her temperature was warmer than normal. She had the usual "not feeling good" look as usual. I felt sick. I knew I should be taking a shower because I was almost sure we would be headed to the hospital. I could not leave Katlyn though. I was way too worried. I waited exactly an hour and then called the doctor. She said she was pretty certain it was gvhd and that we could continue to put the stteroid cream on the rash and we would reassess tomorrow. Depending on the rash we may increase her prednisone. We definelty will not decrease the prednisone this week. We knew that this could happen. When weening prednisone, it is possible to have a flare up again. So far though, it seems to be getting much better today. Besides that, we need to change the dosage of one of Katlyn's medications as her level is too low. This medication is available in 250 mg capsules, and 500 mg tablets. With Katlyn's new dose we cannot use either of these. It will have to be liquid formulation. So this morning I was trying to figure out how we were going to get this liquid formulation. Sometimes you have to get medication compounded and with anti rejection drugs, they have to be done under a special hood so that the pharmacist is not inhaling the medication. In our area there are two pharmacies that have access to a hood. The first pharmacy said it would take them about a week to make the medication, which we needed two days ago and the second pharmacy said they were waiting to hear from the IWK about the recipe. Me being me, I couldn't wait, so I called the pharmacy myself asked if they could contact the pharmacy for me so we could get this done quickly. I'm not sure why anyone thought that this drug had to be compouded, as the IWK informed me that there was a commercially available liquid form. Well that solved a lot of problems. So our local pharmacy will be stocking this medication for Katlyn and I will be able to get it tomorrow. But then came my next problem. The pharmacy advised us that there was a problem with the billing. Basically it was just a technicality and needed some special authorizaton, but I was so relieved to learn that it has been approved. Anti rejection medications are not cheap. I knew it would be covered, but I still cannot help but stress. Meanwhile Katlyn's doctor sends me outstanding news that once again her chemerism test is 100 % donor cells. This is awesome!!!!!!!!!!! She is eating and drinking well and we are blessed with her little smile more and more. God is good. Please continue to keep Katlyn in your prayers. She does still have that terrible virus causing her to cough a lot and then the norovirus. We need this rash to be resolved quickly. And then we need for her platelets to also come up also (we will be rechecking that on wednesday.
Day +84 it's been a long couple of days for Katlyn as today was her appointment in Halifax. Everything went pretty well. As I mentioned before, Katlyns liver enzymes had been elevated and there was concern that this could be a virus, the septra or gvhd. Well last week the number did come down and again this week down again. I got to be honest though, a lot of me was still scared and trying to prepare myself for the possibility of a hospital stay. So it appears as though the septra was probably the culprit for this. So no more septra for Katlyn for awhile. Instead she had to have an inhalation of Pentamidine to protect her from pcp pneumonia. The septra protects Katlyn from more than just the pcp pneumonia, but right now it's causing her too much harm. This is the second time Katlyn has the inhalation and she did amazing. Last time she was very upset, freaking out and crying. This time she worked very hard to get it inhaled through all the coughing. Katlyn does still has a runny nose and cough, so the doctor thought it was a good idea to check her lungs with xray and they are clear! ! Katlyns platelets have been dropping with the last two bloodwork checks. It's hard to know why, but the hemotologist does not think it is gvhd. It could be the norovirus or this new virus Katlyn has. It could be that for whatever reason she is losing them at a rate that she cannot replace fast enough. It could be the septra or another medicine she is on. I'm going to quietly point my finger at septra and hope they recover quickly since the septra has been taken away. I stop dropping so that katlyn is not in danger. Also the last visit we had at the iwk, Katlyn started to take phosphorus, which she did not tolerate well. I asked the doctor if we could push milk and she agreed it would be better. Well for the second week in a row this value is up! ! I have be making sure Katlyn gets a minimum of 750 mls of milk each day and although her number is still a little low, it's much better! !! Katlyns ivig dosage has been cut in half as well, as her trough level was pretty high, probably because she is not losing as many of the immunoglobulins due to the norovirus. This weeks appointment really put in perspective how far Katlyn has come. She smiled much more today, and hooked around with the nurses and doctors. Her little body is staring to heal and it is evident in her hair starting to grow back and how she had interest in eating again. Our little amazing girl is starting to feel a little like get old self again. It's amazing. We still have a long way to go and a lot of work amd patience still. One day at a time we will get there. We need lots of prayers that Katlyn can beat these two viruses (norovirus and this awful cough/runny nose), that her platelets recover quickly, that all her counts continue to improve, that she starts to gain some weight on her little body and gets stronger and stronger. And Lord give me the strength and the patience to take care of Katlyn and overcome her stubbornness to ensure that all of the things we can control are done to keep her healthy and safe.
Friday, October 17, 2014
Day +78 I know it has been awhile since I have updated any progress on Katlyn. Its because it is a lot of work taking care of her, and I barely have time to do much extra. It's getting better though as Katlyn is also starting to feel much better. Up until a few days ago, Katlyn didn't even have enough energy to get off the couch. Her days were spent taking her meds and trying to eat through all the nausea. She has a virus right now with runny nose, sore throat and a cough, but I can tell she is already starting to feel better. I imagine she must have picked it up at one of the hospitals because we have not been anywhere except the hospital with her, and she had the runny nose before we even brought her home. On the plus side though her pediatric immunologist at the IWK said she already had a few T-lymphocytes on flow cytometry. This is amazing news!!! So hopefully Katlyn's new immune system can take care of this one on its own slowly. It really blows me away how far she has come. She is now wanting to get around more. She doesn't have any interest in sitting on the couch at all. She is starting to joke and laugh again. I can also tell that the effect of the steroid is starting wear off too, as the aggression and nervousness is also going away. She had been super dizzy last weekend, which was a huge scare for us. That also seems to have gotten better. She wanted to decorate for Halloween a couple of nights ago, and we made roll out sugar cookies. Last night we carved our first pumpkin of the year. My heart just melts when I see her coming back. For instance when we were carving the pumpkin, she was laughing and having a time while putting pumpkin guts on my arm. She would also randomly just look up at me and tell me that she loves me. This really is the hardest thing I have ever done in my whole life. To have to watch her in so much pain and discomfort. Watch her struggle the way she has had to. This is not easy for her. I am starting to see the light though. Her little smile tells me we are getting closer. She told me a couple of nights ago that she was so happy because she felt accomplished an fulfilled. On the bloodwork side of things this continue to look pretty good. There was a question last week as her liver enzymes had become really elevated. They thought it may be a virus, her septra or gvhd. If it was gvhd, we need to prepare to stay in the hospital with her. So we stopped the septra and she never had any this week. Her liver enzymes came down quite a bit on Wednesday, and it looks like the culprit is the septra. Her platelets and hemoglobin and white blood cells also have come down, not to a scary level, but septra is also suspected. Septra protects Katlyn from PCP pneumonia as well as some other bacteria infections. She will not be able to have it though, and instead she will have Pentamidin inhalation instead. This is only given monthly which is nice, but it only protects her from the PCP pneumonia. I ask for your continued thoughts and prayers for Katlyn. God has been good. The support we have received is amazing. It really has been our backbone through all of this. Thank you.
Day +66 Katlyn is doing very well being at home. She seems to come around a little more each day. If I think back to when we first came home from Montreal or even sooner, just last week, it amazes me how different she is. She is eating better, having less nausea and more interest in doing things. The steroids that she is on have really compounded things. They have been amazing at working to keep the gvhd away, which is a blessing. However, they do have a lot of side effects. They make her very nervous and very upset and frustrated. Each week the medicine is lowered a tiny bit and in turn the side effects are a little less too. It is great having her home though!! Amazing!! She has a lot if medication but we have already established a routine and it's working well. This week we head to Halifax and I'm pretty excited for them to see how well she is doing.