Nicole Grace ---- Fw: update 11-27-04
Posted by: lifeunlimited <lifeunlimited@...>
Here is Jim's earlier letter to which I referred in my note. He gives you
some detail . . . . up to mid afternoon.
Bob
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Subject: update 11-27-04
Just to update you all since 4:30 this morning.
They did admit Nicole to the hospital here in Quincy this morning.
After several attempts, they finally got blood work and then an iv in
her arm for some stronger antibiotics. At first, he suspected her blood
gases to be bad enough to have to put her on a ventilator and transfer
her back to St. Louis. But the actual lab results showed her blood
gasses were better than he expected. Her blood pressure is quite
elevated, but has come down since they stopped giving her breathing
treatments so close together (once per 6 hours now, instead of 1 per 2.)
Her carbon monoxide level is high - but her ph level is fine which means
her body has been compensating for it all along (or something like that.
sometimes, this gets quite onfusing.) Her white blood count is very
high. The chest x-ray showed a rather small area of actual pneumonia
but lots of fluid in the lungs none-the-less. This could be due to the
pneumonia, the secondary infection, or her already weak heart, being
adversely effected by everything else.
She is doing better than when we arrived. She's up on 2 to 2 liters
of O2 and sats are staying in the 90's. He'll probably turn her down
more this evening. She has her biggest problem when she gets lots of
mucus/drainage in the back of her throat. The meds will break up the
congestion, but she can't cough anything up nor clear her throat. The
mucus then blocks off her airway. The only solution that works is to
keep her very upright for as long as it takes to drain down. That took
about 5-6 hours this morning - so our nurse was very tired. The only
other ways she gets it cleared out is by gagging on it and spitting it
up, or through her diaper. The doctor doesn't really want to do any of
the deep suctioning on her because it can stop the heart on healthy
hearts, so....
Her fever is down from the 104 it was, but still returns as the Tylenol
wears off to around the 102.5 area.
She slept very little all night, but has had some very good naps this
morning. She's currently awake, and trying to swallow drainage - but
not fussing and not dropping her sats.
In a period of about an hour the doctor went from expecting to have to
ventilate her and transfer her to saying she could very well improve and
go home in a few days. However, in nearly the same sentence, he also
said she could "turn" and die in a half hour! But, of course, we've
dealt with that possibility all along.
Of course, with the ventilation possibility, she would HAVE to go to St.
Louis because they do not have that level of nursing care here in Quincy
to handle babies on ventilators. Also, if her heart failure is part of
this and they are unable to do surgery at this time, she would possibly
not ever get off the ventilator and thus not come back home. Being on
ventilators is very painful for babies and we can't hold her when she's
on a vent, so she can't be comforted, etc. So, we already have to make
decisions regarding DNR orders, etc. "just in case".
If we did not believe in God's ability to do the miraculous, our
decision in that area would actually be much easier, although more
grievous. Because we do believe in His ability to step in and heal no
matter what her condition or stage of decline, it is more difficult to
decide whether or not to give her a chance to once again beat the odds
or just let her go. With the extreme developmental delays she has
displayed so far, and other uncertainties that she has, it just adds to
the confusion of all those decisions. If she were to go ahead and have
the heart surgery, and survived it, she would likely be healthier as far
as her heart, lungs, etc. goes. She'd likely be able to fight off the
pneumonia and future ailments better. However, if her brain function
remains as she currently seems, she would be nearly a vegetable with a
healthy heart with very little quality of life for potentially many
years. So, many, I'm sure would say - just let her go and don't put her
through the ventilation and heart surgeries, etc. But if we choose that
route at this stage when it's still "too early to tell" how she will
develop mentally and what level of quality of life she is capable of,
then we have the "what ifs", the "she deserves a chance", etc. to try to
resolve.
Again, these decisions are not absolutely critical that we have to have
an answer today, but she could turn again at any time and we do have to
give the doctors and her home nurses at least an idea of the way we are
leaning "just in case". And, depending on what the Lord has chosen for
her, we may very well have to make that decision at some point in the
future, regardless of when.
For now, she's resting pretty well in the hospital where she'll be for a
couple days at least. Continue to pray for her healing, for our knowing
confidently the right choice in any decisions we have to make, etc.
Also pray that her iv will hold so she can continue to get the
antibiotics she needs. Pray the drainage in her throat will clear out
or at least thin out so she can get it moved out. Pray that we'll rest
as needed while she is here.
WWJ,
Deanna
P.S. She just suffered an apnea spell. or she choked on the gunk broke
loose by the respiratory therapist's treatment - or something. She just
stopped breathing for quite awhile. They suctioned her throat and nose
and stuff and bagged her and got her back. this time. She's back in
normal range now - and looks like she may go back to resting
comfortably. Hopefully, this bunch of junk they suctioned out will go a
long ways toward clearing up the pneumonia / secondary infection.
WWJ,
Jim
PPS - She has had three such spells today. each one worse. each one
taking longer for her to recover from. Doctors in St. Louis have also
told us that they would NOT do heart surgery on her. So, here in this
hospital room, maybe as soon as tonight, we either keep her or lose her.
We'll keep you posted.
WWJ,
Jim