|3/8/04 - Still stable! He looks good this morning. His weight is back down to 1565 and
he looks less puffy. His buddy Maggie says the fluid is going back into the cells.
Whatever is going on he does look much better than he did last week. Today they are
going to try a new trick to decrease or eliminate his pavulon treatments. They let the
pavulon wear off and gave him ativan, a benzodiazepine, which should act as a
sedative. Between that and the morphine, maybe Toby will chill out and stop fighting
the ventilator without being immobilized by pavulon. (We are a little skeptical that this
will work for him, but it is definitely worth trying!) They also decided to decrease his
nitric oxide to 15 ppm and took him off dopamine.
In addition, Maggie started feeding him today! We watched her give him 4 ml of
colostrum. Very exciting!!!
PM - Looks like Toby did not fall for the ativan trick, so he's on Pavulon again. Oh well,
it was worth a try. The reduced nitric oxide is not a problem, and he is still off the
dopamine. If he keeps peeing well, he will not have to go back on the dopamine, which
would be nice.
He appears to like being fed! He is digesting all of his 4 ml feeds every 3 hours. Good
|3/7/04 - This morning Toby is still stable. His vent pressure is a little higher than it was
yesterday, but it's not as high as is was when he was first switched back to the
conventional ventilator. His weight is 1590 g, a record for him. He is definitely puffier
than yesterday but he doesn't look quite as huge as he did when he weighed 1568, his
previous record. Weird. Maybe he's grown. It's hard to know how much/whether he's
grown since birth because the pavulon makes him so puffy. But the docs are going by
1300 g as his weight, assuming that he is growing. Today they are planning on trying
to decrease his vent settings a little bit. They are also going to try and let him wake up
a little so he can mobilize some and get rid of some fluid. Up until now he has not done
well when they let him wake up a little, but then again up until now he has not been as
stable as he is now. So we'll see how he does.
PM - So, they tried decreasing the pressure on his vent, but his blood CO2 levels went
too high and his blood pH went pretty low. So this evening they went back to the
higher pressure. All in all no progress. Hopefully he won't be in really high pressure
for too long....
|3/6/04 - Toby is continuing to do well. He was steady through the night with his oxygen
levels consistently below 40%. His weight this morning was 1501 g, down from the all
time high of 1568 g on 3/2 (birthweight was 1105 g). He is much less puffy and we could
even see his ribs a little when he breathed in. He has been 'leaking' around his
respirator tube, meaning that the tube is significantly smaller than his trachea. So he
leaks air both on the inhale and the exhale. So today he has been deemed stable
enough for a replacement tube. Hopefully this will make it easier to keep his pressures
and nitric oxide doses more tightly regulated.
And as I wrote that, Michelle (his nurse for the day) called to say they have done the tube
replacement and it went fine. Good for Toby.
And his chest Xray showed NO PIE....
|3/5/04 - I didn't get to go in this morning, so I don't know the full scoop. But Dave
reports that Toby improved a little overnight, so they were able to decrease his oxygen
and vent pressure a little. Today they are going to try weaning his dopamine and
hydrocortisone, but I believe they are going to leave the nitric oxide alone for now. It's
great that he has been doing a little better. I don't know if his weight is down or not.
PM - Toby's is continuing to do pretty well. Tonight when we went in they were trying to
dial down some of his vent settings and he seemed to be tolerating it. But he also
seemed a little touchy about it too. We will have to see if he can stick with it. His
dopamine dose is pretty low now and today was his last day of Vancomycin. Yea, Toby!
|3/4/04 - When we went in last night, Toby was not oxygenating very well and his blood
gasses were not great. The conventional ventilator seemed to have helped him only
temporarily, and they were discussing whether to put him back on the high frequency
vent. This morning, however, we learned that they were able to tweak the settings on
the conventional ventilator and improve his oxygenation. So he did not have to go back
to the high-fi. His weight was down another 10 g which is good news and his blood
gasses were pretty respectible. So he was a little better than he was yesterday.
He seems to be good in the mornings and not as good in the evenings. Interesting....
PM - Tonight he proved me wrong by still being in pretty good shape. We'll see how he
|3/3/04 - Toby's oxygenation levels declined again last night to the point where they had
to hand bag him quite a bit. He did a lot better hand bagged, so they decided to switch
him off the high frequency ventilator and back to the regular "conventional" ventilator.
On the conventional, he is oxygenating very well. Also his weight is down 50g, so the
dopamine, albumin and cortisol are doing their jobs. The docs are hopeful that he will
continue to pee out the excess fluid. His cortisol levels were quite low before they gave
him any, so in fact he did need it. The blood culture so far is negative. So, for now he is
marginally better than he was 24 hours ago.
|3/2/04 - Tobias is about the same as yesterday. His vent settings are up a little bit and
his oxygenation is okay but not great. Basically he's just hanging in there. He is also
very swollen. He has about 400 g of extra fluid weight, which is about 400 mL or 13
ounces. His blood pH is a little low, which bothers the docs also. Today they are going
to give him several things to try to help him reduce his swelling - dopamine, albumin and
cortisol. They are going to repeat his cardiac ultrasound to try to assess his PDA, and
are going to do a blood culture to rule out any systemic infection.