|6/21/04 Toby had another great blood gas today, the third in a row since his surgeries.
It's official - he's holding steady with a pCO2 of 50 and a bicarb of 27! This is a
tremendous improvement over where he was a few weeks ago (pCO2 of 70-80 and
bicarb of 32-40). So it looks like Toby is on the mend. Now we just have to keep him
cold and flu-free so he can have a chance to grow out of his lung disease. Yea!!!!
|6/20/04 Father's Day!!! Toby somehow managed to get Dave a card and a present!
What a resourceful little boy. Toby had a great day, with his oxygen down at 0.1 all
day. He passed his car seat test (no surprise), meaning when it's time to go home he
will be fine in the car seat.
Toby also had his 4 month immunizations. He cried a little as they were injecting him,
then as soon as the injections were over he stopped crying and went to sleep. I've
never seen anything quite like it.
|6/19/04 Today was pretty good. Weekends are nice and quiet. Toby had a nice, calm
|6/18/04 Toby had a very exciting day today. He got to learn to use the 'binky trainer', a
binky hooked up to some food that is very very low flow. The idea is to let him 'eat' a
few mls of food a day to keep him interested in eating and to help him work on his
suck, swallow, breathe skills in a controlled way that does not endanger his lungs. He
liked the binky trainer very much. We also started feeding him through his G-tube, and
it went well. No more tube down the nose and throat - yippee!
|6/17/04 Toby had another good day. He played with his toys alot and had some quiet
awake time. Tomorrow we get to try his G tube for the first time.
|6/16/04 Toby was feeling much better today. He slept a lot but that's probably because
he didn't sleep much Monday or Tuesday! He also had a great blood gas and we got
him all the way down to 0.15 on his oxygen, a new record! Yea, Toby!!! We tried
turning it off but that was a spectacular failure. Oh well, worth a try.
|6/15/04 Another fussy day. Not as bad as yesterday but not pretty either. Poor Toby.
Sure hope he feels better soon.