June 18 - TMI

17:55 - Sometimes we just have too much information to share -- so I'm just going to plow through it as best I can recall and until my steam runs out. We missed posting yesterday, which is my fault. I told Phoo I'd do it and by the time I finished cleaning I didn't have it in me. Onward...

First and foremost, it seems after the CPAP scare over the weekend, Max has stabilized and his health is holding. We have daily ups and downs and if we report every little thing that goes wrong, we'll drive you (and ourselves) crazy. Like for instance, yesterday he finished up the vancomycin to treat the intestinal infection. While on the medication he had no blood in his stool, until this morning when there was a spot of fresh blood in his stool. There's also been fresh flecks of blood in his feeding residuals after a week of no blood. Nurse S. and I decided that we need to focus on his overall health because we know he will keep having good and bad days, and good and bad episodes each day. If we get upset over every episode and each little blip we'll all go nutso.

Adding to the ups and downs is Max' platelets situation. Today they are up again, on their own. They were 25K on Friday, 22K on Monday, and 28K today. He hasn't been transfused since early last week, and it doesn't seem he'll get another transfusion until his platelets take an alarming dip. I had a long talk with Dr. R. about what the numbers mean and how each doctor has a different threshold for when to transfuse. He says there's really no difference between 20K and 30K, they're both equally low numbers and 10K won't make a difference if Max gets into trouble. Plus, more frequent transfusions create a risk that Max' body will begin to create antibodies to new platelets, so we need to minimize the number of transfusions.

With respect to Max' lungs, it seems the Lasix is doing its job. His blood gases have come back in the 50s for the past two days; another day off of CPAP means another day his lungs get stronger on their own.

The feedings are going okay, some days are better than others. Max seems to really enjoy it, but after 15 minutes of working really hard, he poops out and doesn't seem to have the energy to continue. Last night he drank 35ML, today it was 23ML. Dr. G. came by while he was eating and asked why I wasn't holding the bottle. I told him I wasn't ready yet. He said that I need to get ready because once Max' condition stabilizes, he'll probably be ready to come home; Dr. G. seems to think Max is entering a "chronic" phase of his illness and we need to start entertaining the idea of leaving the hospital. (DON'T GET EXCITED, we've heard this before.) It's possible that when he does come home that he'll have to have a feeding tube in addition to the bottle. We don't even bother getting our hopes up anymore. I'll believe Max is coming home when we're walking out the door. Back to feedings: starting tomorrow Max will get 6 feedings per day instead of 8. Dr. G. wants Max to get better rest between feedings and to get a little hungrier between each.

I know there's more to report, but it has been a long several days. Plus Meaghan has realized that Mommy is not paying attention to her.