Week 4
3/15/04 - Toby is doing pretty well.  (Talk about a sliding scale!)  He got his transfusion
last night, and some lasix, and he's peeing again.  His blood pressure is a little better
today as well.  They turned his nitric oxide down to 2 ppm today.  The plan is to have
him off before he goes to surgery.  No word yet about when that will be.
In other news, he's graduated into the next size diapers - pretty exciting for him, we're

PM - Tonight we learned that Toby is having surgery tomorrow!  Earlier than we
expected, which is terrific!  I expect we will be at the hospital all day, so there won't be
an update until late.  But the procedure is routine and Toby has been pretty strong
lately.  Hopefully all will go well.  Yippee!!
3/14/04 - Things seem to be holding steady.  Today they are going to do some fine
tuning of his drugs and fluids to try to get him in the best shape possible for the
surgery.  I'm sure that will be the plan from now until then.  Looks like the surgeon will
not be available until Wednesday at the earliest.  So for now we wait and keep Toby as
comfy as possible.  He still looks good, squirming around and opening his little eyes.

PM - Toby is looking a little puffy again.  Not as much as when he was on Pavulon
though.  He hasn't been peeing very much, so he's probably retaining some fluid.  
Tonight he'll get a transfusion since his hematocrit is low again.  His oxygen saturation
is really swinging all over the place.  Maybe the transfusion will help with that a little.  
His dopamine was increased quite a bit today as well
3/13/04 - Toby is doing a little better today than yesterday.  They put him back on a low
level of dopamine and he's peeing well again.  When we got there he was sleeping
pretty soundly.  But after we got back from rounds, he was awake, looking all around
and sticking out his tongue.  
We haven't talked to the surgeon yet.  Just waiting....
3/12/04 - Toby is not feeling so good today.  He spiked a fever last night, which is gone
now.  He's not eating or peeing.  His nitric oxide is back up to 5 ppm and his vent
settings are higher.  But he's still active and oxygenating okay.  He could have a
urinary tract infection or a blood clot at one of the kidneys.  (The clot would be from the
umbilical line that was removed yesterday.)  Or he could have an infection somewhere
else.  It's hard to know for sure.  They started him on antibiotics, in case there's an
infection, and are culturing his blood, urine, and tracheal aspirate.   They will do some
imaging to see if there are any blood clots anywhere. They are also starting him on a
low level of dopamine to help him start peeing again.  Hopefully the antibiotics will kick
in and he'll start feeling better soon!

PM - Well, tonight we learned what the problem is.  Toby's PDA is back open again and
it's pretty big.  Indomethacin is not a option at this point, so he will have to have
surgery.  While surgery is not exactly a dream come true, we are more comfortable with
the PDA being the problem than sepsis or a blood clot occluding the kidneys.  The
surgery is a ten minute procedure that they have done a lot.  And there is a good
chance that he will have a few days of instability afterwards while his body recovers
from the sudden change in blood flow patterns.  So next week is not going to easy, but
when it's all over he'll be much better off than he is now.  It's good to know what the
problem is and that they know how to fix it.  (That makes Dave especially happy.)  And
because of all the efforts of everyone at the NICU, Toby is now strong enough to
withstand surgery!  We will talk with the cardiac doc tomorrow and hopefully get a
better idea of when the surgery will happen.
3/11/04 - He's still doing well!  He is up to 8 ml feeds now.  His nitric oxide is down to 4
ppm, and he's on (very) slightly less morphine.  He is still pretty squirmy, but it seemed
like he was fighting the ventilator less than he was yesterday.  He's still under the billi
lights but he looks much 'less yellow.'  (Just like you, Becky!)  Not pooping regularly
yet, so he may just end up with a little 'therapy' to help him out there...  

PM - Toby's i.v. line, his umbilical catheter and his skin temperature probe are all gone!  
Good for you Toby!  He could get another i.v. in the future if needed.  But for now he's
3/10/04 - Toby is still off Pavulon, which is terrific.  They gave him lasix again with his
transfusion yesterday to make him pee more, and pee he did!  He is much smaller.  He is
starting to look like a normal baby again.  His face has lost a lot of its swelling, to the
point where he can partially open his eyes.  When we got there he opened his eyes
several times and looked right at us.  It was great!  I've never seen his eyes before.  He's
really moving around alot, and he's doing what looks like holding his breath.  He
scrunches up his face and gets really red.  He is also stretching his arms and legs
straight out which is really cool to watch.  His weight this morning was 1516g and he is
now over 16 inches long.  Good job with the growing, Toby!

He is jaundicing again so he has to go back under the billi light this afternoon.  He really
should be over the jaundice thing by now, which is a little puzzling.  And they hadn't
seen any sign of bowel activity so they were talking about giving him something for that,
but then while we were there he had a big ole poopy diaper.  So that issue seems to
have solved itself.  The echo from yesterday showed that his PDA is small, and they are
not concerned about it.  He will have another head ultrasound probably sometime next
3/9/04 - This morning when we went in, Toby was off Pavulon and had been so for about
9 hours!  They managed to get him off by increasing his morphine drip.  He was
squirming around like crazy, he doesn't tolerate handling quite so well, and his oxygen
saturation levels are really up and down.  But he seems to be staying in a reasonable
range and he's off Pavulon!  That is great.  He is still tolerating his feeds and they
increased his food from 4 to 5 ml.  He had another echo to look at the PDA this morning,
but we don't know the result.  They have his nitric oxide turned down to 10 ppm as well.  
Go, go Toby!

PM -  He is still doing well without the Pavulon (yea!) and is continuing to eat everything
Maggie gives him.  He got a transfusion today to bring his hematocrit up.  So great to
see him shrinking down to normal size and moving his little arms and legs!