Thursday, November 20, 2014

Day +98

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.