Praise the Lord! We are out of the ICU. I am so glad to be out of there and Tyler is too. He was missing all of his girlfriends from the heart center. He was welcomed back today by many of his favorite nurses.
On Sunday we had the two options for going forward and we were waiting to hear back from the surgeon....well, he is off this week so he thought we should do TPN until Friday and then do pleurodesis. We did not like this option because it was essentially exactly what we did the week before with the TPN and would require a new PICC line and the painful surgery. If we were going to risk a PICC, then we need to try TPN to its full potential and not do it half way. We asked for the opinion of the cardiac intensivist who we had been working with (who is out of the country this week). He has experience working with stubborn cases of chylous effusions. He told us that Tyler reminds him very much of another patient that he had five years ago that was the worst case he had ever seen. At least he thought Tyler's wasn't quite as bad as the other and the other child is 5 today, so that was re-assuring. We won't go into how long the other child was in the hospital. His opinion is the try the TPN for at least 7-10 days to be double what we did last time. We are still afraid of the PICC line since it is the reason for our current issues. We are hoping for no clots this time. The hope is that Tyler will heal during this time of no feeding and his body will develop some collateral vessels to help absorb the fluid back into his system.
We started the TPN on Sunday night and stopped all of Tyler's feeds. He is a real trooper for going at this again with no food. He still manages to have some happy times during the day with huge smiles. The rest of the day is spent being held and bounced. We weaned his Oxygen off today and pulled the NG tube out since he isn't getting feeds. I can't wait to take some photos of him with no tape!
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