Day 15

It's hard to believe how slowly 2 weeks can pass, and it feels as if we've been inpatient for much longer. Still no specific end in sight. The gallium scan came back clear, which is good, but that means there is no good explanation for the fevers. However it has been almost 48 hrs now since the last fever spike, so praying we have seen the last of them. That is the good news.

Now for the bad...we tried adding a microlipid (fat source) to Noah's feeds yesterday, which I was so hopeful about, but it was miserable. Diarrhea and abdominal cramps all night last night made for a night of very little sleep for anyone. It was very obvious that his gut just won't accept this type of fat. By this morning he was looking dry from all the water loss stools, so he needed a couple of fluid boluses to get him back on track. So that brings us back to square one again. This coming week, we will try adding the Neocate again in an effort to get his fat requirement in. His weight continues to drop and I don't know how much more he is able to lose. It seems as there is almost nothing left to him, and his energy level is so low that sitting up for a few minutes is enough to wipe him out for the next couple of hours. He is almost a kilogram less than before this hospital stay, and it is so frustrating to watch him shed all those grams we worked so hard to gain. I get more and more concerned with how we are going to manage without our central line. 

Brad is doing night duty at the hospital tonight and I am looking forward to a decent night's sleep. Praying things will look better once I am more rested.