Monday, October 27, 2014
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.