|3/1/04 - Things have not changed much. He is requiring more oxygen, and his MAP is 14
and nitric oxide is up to 10 ppm. It's hard to know (not being doctors and not having
any experience in this area) if this is a decline in his lung function or just typical ups and
downs of being on the vent with nitic oxide. Frustrating to just sit and watch.
|2/29/04 - Well, to quote the doctors, Toby was cruising along and now he's stalled. Over
the night he wasn't saturating so well and his lungs weren't quite as open as they've
been so they increased his MAP back to 14 and his nitric oxide to 5 ppm. I don't think
this is an unusual occurrence. It is very hard to wean off nitric oxide and sometimes it's
two steps forward, one step back.
In the good news area, he's still off dopamine and his blood pressures are good! This is
great because getting off the dopamine gets him a step closer to being able to feed him!
PM - No change. He is still off dopamine (good!) and his MAP is still 14 and NO is 5 ppm.
But stable is good... stable is good... stable is good...
Also tonight, I got to change his diaper for the first time. It was pretty easy with him all
unable to move from the Pavulon, but a little scary since his is so tiny and he has so
many wires coming out of him!
|2/28/04 - Toby is about the same. His vent is still on 13.1, and his nitric oxide is down to
4 ppm. They have tried several times over the last few days to wean him off dopamine,
but he keeps desaturating and they have to put him back on. He is on the smallest
dopamine dose they can give him, but I guess he still needs it. He's still on pavulon,
which is making him very, very puffy. But the docs say his urine output is good and
they don't seem too worried. Today they are going to let him be for the most part and
tonight they will try decreasing the vent settings some more. They will probably give
him a dose of lasix to help him get rid of some of the excess fluid.
PM - Tonight we went in to find that Toby has been off all dopamine for the last 8 hours!
That is his longest non-dopamine period so far. If he can manage to stay off dopamine
that will be a big accomplishment! Also his nitric oxide is down to 2 ppm. They tried to
remove it but he immediately desaturated. So he will stay on it for now. He is also off
Pavulon, which will help him reduce his puffyness. However, at any time he could end
up back on either drug. But it's progress!
|2/27/04 - We got to the hospital late so we missed rounds today. Toby had a little bit of
progress overnight. His vent settings are down a bit from 13.6 (MAP) to 13.1. The magic
number is 10, so we are getting a little closer every day. The official report on the head
scan is that everything looks normal. Today the plan is to leave him alone as much as
possible and let him improve.
The last two times they have listened for his heart murmur, they have not heard it.
Maybe the PDA closed off the rest of the way on it's own? We won't know for sure until
he's off the high frequency vent.
PM - We didn't go in tonight. Took the night off. We did call in and Toby had a good
day. His vent settings are about the same, but he was stable and well oxygenated all
day. Rest, little baby!
|2/26/04 - Toby is a little bit better than when we left him last night. His vent settings are
down a little and the amount of oxygen they are supplementing him with is also down.
Last night they identified the microbe infecting his lungs and changed antibiotics to one
specific for this bacterium. He was already responding well to ampicillin, so he should
do even better on Vancomycin. His chest X ray this morning is much clearer.
For today, they are going to decrease his nitric oxide levels to 10 ppm, half what he
started with, and they are planning a head ultrasound. The head ultrasound will tell us
whether he has experienced any bleeding, a danger of having his blood pressure raised
to get the lungs to open up. It will also tell us whether there is any sign of periventricular
leukomalacia (PVL). This is a disease where brain tissue actually dies from lack of
oxygen. Toby has had two periods of low oxygenation - birth and last Monday. This
scan will tell us about whether he's suffered any damage from birth. Next week they will
scan again to look for signs of PVL as a result of Monday's problems. They were doing
the ultrasound as we were there but the official report won't be back until tonight.
PM - Not much change in Toby's status. The vent settings are the same as this morning.
His heart rate is good at 160 (it was up at 210 at one point) and his blood pressure is
now in a more normal range of about 35. He is already down to just 5 ppm nitric oxide.
He is on less morphine, but still on Pavulon. The official report on his brain ultrasound
is still not in, but the unofficial word is everything looks normal. One more to go before
he is in the clear as far as PVL is concerned.
|2/25/04 - A.M. When we got in this morning, Debbie, one of his nurses, announced that
he had a "fabulous" night. His blood gasses continued to improve, and they were able
to dial down the settings on the ventilator a little bit. He is responding well to the
antibiotics. This morning's chest X ray was much clearer than yesterday's. He is off the
Pavulon and was awake. He seemed to be very unhappy with the ventilator and was
squirming around and trying to breathe on his own. He even opened his eyes a few
times as if to say "what the heck are you all doing to me?" He is puffy but his skin is
nice and pink and it's great to see him moving around again.
For today they are going to try to get a new echo of his heart to see how the PDA is
looking and what the pulmonary blood pressure is. They will increase his morphine
levels so he is more comfortable and sedated. And they will continue to try to dial down
his ventilator settings and nitric oxide dose. But very slowly...
By the way, Tobias says "Thank you Great Gramp and Gram Belyea for the nice
clothes!" He can't wait to be able to try them on!
PM - No real change. His ventilator settings are a little down and his nitric oxide is at 19
ppm down from 20, but overall things are the same. Slow progress is good. The echo
showed no flow across the PDA which means either the pressure is the same on both
sides (most likely) or the PDA has closed (that'd be a bonus!). They did the echo quickly
and didn't look at the PDA itself. He's back on Pavulon again as he still is not tolerating
the ventilator. I wouldn't either!!!
|2/24/04 - Tobias is holding in there. His lung and blood oxygen saturation are
unchanged from last night and his blood pH is good. His chest X rays are cloudy,
which could be pneumonia or simply his lungs contracted down. So he is now on
antibiotics as well as all the other stuff. Today they are going to let him be for the most
part and see if he improves. They are going to try weaning him from the paralytic agent
but if he fights the ventilator he will have to go back on the drugs. When we left him at
noon he was starting to 'wake up'. We will see what happens when we go back tonight.
|2/24/04 - Part II - Tonight we went back to the NICU and Toby's blood gasses were much
improved! His arterial oxygen levels were at 71, as opposed to 25 last night. They will
start to (very slowly) dial down the ventilator settings and tomorrow they may start
decreasing his nitric oxide dose.
We also found out that he does indeed have pneumonia. So his improvement could be
the antibiotics, which have been on board for 24 hours now, or could be due to the
nitric oxide and ventilator popping his lung sacs open. Either way, we'll take it!
He did fight the ventilator quite a bit so they had to put him back on Pavulon, the