5/17/04 - Things are the same. Today Toby had his first day of no nipple feedings and
he did not appreciate it! He was yelling at us for many hours even when he had a full
tummy. Poor Toby!
5/16/04 - Not as good a day today. Toby continues to ventilate poorly. He has
pulmonary hypertension and right ventriclar hypertrophy. Yet his blood pH is good
and he doesn't show any signs of distress. He is what they are calling a
'non-responder', meaning he is not responding to the high CO2 levels in his blood by
breathing harder. The lasix doesn't seem to have made any difference so it's not likely
to be fluid overload. But it's not clear what the problem is, other than his prematurity
and chronic lung disease. He is going on chronic diuretics and no more nipple
feedings as a first step to try to get back to where we were 2-3 weeks ago. Meanwhile
the doctors are still trying to figure out what's going on.
He doesn't look to be in any danger and he's certainly not behaving any differently, but
this most definitely must be fixed and he's stuck at the hospital for a while longer.
5/15/04 - Toby continued to nipple his feeds yesterday, up through midnight! That is a
record by a long shot. It won't be too long before he's nippling everything. Woo hoo!
He still has some kind of ventilation issue. His blood CO2 levels are high, though he's
not showing any signs of distress at all. He is not requiring more oxygen or working
harder to breathe, and his blood pH is good. His echo shows that his heart looks
about the same, and his chest Xray looks about the same as last time too. The doctor
is both surprised and perplexed as to why this is happening. He is going to continue
to investigate why this, and follow the blood gas.
5/14/04 - What a day! Toby ate all of 4 feeds in a row (9 am, 12 pm, 3 pm and 6 pm) by
nipple! And the 6 pm feed was after a bath even! Usually baths wipe him out and
there's no chance of eating after that. But tonight he was still game. Of course after
eating he fell soundly asleep.
He also showed signs that he's not ventilating as well as he should. He had a chest X
ray and echo of his heart to see what might be the problem. Could be fluid in the lungs
or could be his lingering murmur. He also got a dose of lasix to dry him out a little. I
guess we will find out more tomorrow. He doesn't show any symptoms of having
trouble so that is good.
5/13/04 - Toby didn't nipple so much today. But he still did some. He was tired from all
the nippling he did yesterday. And his schedule was a bit off so he wasn't himself. But
that's okay. He'll be back tomorrow!
5/12/04 - Not much new today. Toby was a very good nippler today. He ate a lot by
bottle. Good boy!
5/11/04 - Toby had a fabulous day today. He nippled all or part of several feeds, he
breastfed and got 26 ml, a record, and he at times was at a new all time low oxygen flow
rate. But he also had a couple of serious desats too. So he has a way to go still. He is
also having an easy time keeping warm, so he's requiring much less clothes and
blankets than he has in the past. No hat, no socks, and only one blankie!