Still Here

It has been a while since I've updated since we are still in the hospital. Noah has had a difficult week. He began spiking fevers again a few days after his temporary line went in. Blood cultures showed a new line infection. Again he wasn't responding to antibiotics. He also began guarding the leg that his femoral line was in and crying in pain when we tried to move it. So again it was decided that this line had to be pulled. Anesthesia put in a peripheral IV (twice, as Noah decided to pull the first one out himself) and tonight he will go back to the O.R. for a new tunneled central line. We take the risk that this line will again become infected, but Noah needs IV access so we do not have much choice. He is still having low grade fevers, but hopefully this will now improve.

We also did a PH study on Noah last Monday to see if he is still refluxing. We do not have the results yet, but it was a miserable experience and Noah wasn't tolerating his feeds well at all. So we have once again taken him off his feeds. Noah's comfort and quality of life is most important. Once we get in a new central line, we will restart full TPN likely on a long term basis, or as long as his liver will tolerate it. The good news is that through all this his blood sugars have stabilized.

Please continue to pray that we will be able to put a plan in place to get Noah home. We need some sun!!