I've only got a second - Noah is still feeling OK. He isn't really acting sick at all except for some extra pain. In fact, we surprised him tonight with a trip to see Frozen (which he LOVED)!!! He's only been to the movies a couple of times so this was a huge treat. He'd been hearing Mary Faith and Sarah talk about it (I took them on Sarah's birthday) and was just so eager to see it himself that we decided to let him see it on the big screen. He's also enjoyed doing a number of Christmas crafts with the other children.
His central line site does not look any better, but it doesn't look worse either. I'd prefer better but am willing to settle for "not worse" when it's this close to Christmas! All of his other lines are taking turns doing better/worse/better/worse. Wednesday there were a lot of blood clots in his urine, but Thursday his urine was better . . . but his supra pubic site looked awful and he had a lot of bleeding coming from around his g-tube (indicating bleeding in his stomach or blood backing up into his stomach from his gut). Today his supra pubic looks better but the g-tube is still bleeding.
I feel pretty confident that the antibiotics are keeping things from getting worse but I'm not quite sure that they are what we'll need to actually get things turned around. I wouldn't be surprised if we ended up switching or adding meds in the next couple of days.
The sleep medicine visit was far easier than I'd anticipated. Jeff and I had been concerned about having to make a difficult (impossible) decision and at this point the doctor feels that what we are currently doing is FAR better than the intervention that had been mentioned previously. It's a big relief as we really didn't want to do anything drastic and now we don't have to even think about it for at least a good long while. It's still early, but we'd appreciate prayers for his ophthalmologist visit coming up January 8. His strabismus has been worsening very dramatically over the last few weeks and we need wisdom to know what (if anything) to do. I called this week and got an appointment for David for the same day - he seems to be holding his books very close to his face, has increased the font size on his Kindle, etc. and I suspect that glasses are in his future.
Not sure if I'll get to update again before Christmas - if not, have a wonderful, blessed Christmas. We are just so excited for all of the various family members to start arriving and are looking forward to making lots of wonderful memories!!! Of course, we are praying that none of those memories involve hospitals or doctor's offices!
Blessings,
Kate
