Thursday, December 18, 2008

Update

I hate to even put this in writing because I know I'm jinxing it, but the transplant team said this morning we're looking at Monday for going to the "h-word"!!! We shall see, but it's encouraging nonetheless. Not a lot of changes other than that. We've stalled in increasing Keegan's formula intake at the level we started last Monday (24kcal, 27ml/hour). The words "quality" and "dirty" should never go in the same sentence, but unfortunately here they are: the quality of his dirty diapers wasn't as good after we made the jump from 22 to 24kcal. We decided to put off increase his volume to 30ml (or 1 ounce) until today, and then Keegan's sedated echo and EKG got pushed to today also. From past experience, I know that the drug they use to sedate the babies for echos wrecks havoc on Keegan's stomach. It took a little convincing (and some physical evidence in his diapers afterward!), but I think everyone's glad we didn't push him today. The last thing we want is to slide back down and have to wait a week to make the next increase. We will not change his TPN again for awhile, so he will probably be leaving here on 12 hours of TPN/lipids. Today his liver enzymes were high but not dangerously so. We didn't see GI today, but I think they'll put off any further testing for now.

Some other good news from hem/onc. There were no antibodies to his neutrophils detected, so we feel more confident that he's not destroying his marrow at a more basic level. We will continue to support him with the GCSF as needed. Lately, he continues to be moderately neutropenic, nowhere near where he was. The blood cultures from Tuesday are still negative, so we shouldn't need to put him back on GCSF for now. The lab will watch his cultures for 5 days, but it's a good sign that the staph hasn't shown up after 48 hours. His red counts are getting closer to transfusion level, so we'll see how he does over the weekend.

We're doing ok here. If there's one good thing about being here, it's getting to spend a lot of time together as a family. That's truly a blessing at the holidays. We'll update again soon. Thank you, thank you for your prayers, love, and support that have brought Keegan so far in the last few months.