He
seems to have leveled out on much lower numbers. With each new phase
brings new things to celebrate and new scary stuff. The 2 steps forward 1
step back rule. They have a theory that with all of the extra movement
yesterday that his canulas(big tubes in his neck that bring blood to
& from the machine for lung bypass) shifted slightly during the
movements and reduced the flow some, but also is started
something called "streaming". The blood that is mixing isn't all of the
way saturated with oxygen due to the placement, slowing the flow of one
of the canulas. So, streams of not as well oxygenated blood go through
the body. By the time it mixes all the way around, it is at a pretty
good level when it gets back to the machine. They double checked the
machine it's self is accurate too. The machine is happy with the
numbers, his body is just a big mixer until it gets back to the machine.
So, his brain & body are getting good numbers, it just shows up
wonky during the mixing process. They have him really sleepy now, he was
waving his arm hi and pushing the nurses away too yesterday. We all
knew he is a fighter, he is getting stronger and these are the risks
that go with that part too. He will get more sleepy medicine more often
now, is part of the plan. The cardiac specialists will come by today to
check it all out too. I really like his doctor last night & today.
It is never fun to see numbers change drastically. Whatever is going on
he is more stable now. Thank you for all of the prayers ♥ Keep them
coming, we would like to have the numbers back to a really happy place ♥
Thursday, January 3, 2013
It was a long day but he is finally doing a
little better! Whew! He was having the fluid balance issue again &
then they thought he was septic again. His numbers got scary low and
staying there. Now they are slowly creeping back up. We are due for
some good news ♥ So, we gave him his baby toy that makes music when you
push on it. He LOVED it! He kept pushing it over & over and wanted
to show the nurses how he could do it
too. He was showing the nurses his pretty smile and he liked that it
made the smile & happy. Everyone here is falling in love with him ♥
Other than those scary numbers earlier, he is in a good number place
for the minute & I will just enjoy this minute ♥ Thank you for the
prayers! ♥
Wednesday, January 2, 2013
Boring rounds
Boring rounds tonight. After all of those
doctors & ultra sounds the answer was.....they have no answer. We
just have to ride this out. The sooner we are off of this machine, the
better. I love technology, but it is scary too. I think we may have
close to a month or more on it ahead of us. The good news is that it
was a big gookie day, better out than in. They say you can't breathe
with all of that gook in there. That is progress! Baby steps ♥ Ok, we
need a prayer for a quiet night, he really deserves one. Thank you ♥
lots of differnt kinds of doctors today
The heart/ECMO/canula doctors were here
gathering information. We don't have the final word yet. He is stable
at low oxygen saturations. He tends to get exciting right around shift
change at 7pm so I am enjoying the quiet. The child psychologist came
by to give pointers on how I can help Cameron cope with all of the
craziness. I got some really great advice. I am very excited about the
great tips. We are going to make a
poster-board with pictures of his favorite things that he may want.
That way he can point out what he needs. We may get some kind of bell
for his hands so he can alert us when he is awake. He had a nice sleepy
day. Hopefully tonight will be quiet. Thank you for all of you
positive thoughts, prayers, positive energy & white healing light.
We will take it all, whatever it takes to get him better. Thank you
sooooo much ♥ ♥
Tuesday, January 1, 2013
Waves
Waves...he was being really active, swinging
his arm & pulling at his tube tape on his face & watching Diego.
He was having a nice time(as can be in this environment) The
combination made him saturate lower. Now they just want to stay low
& very slowly creep up. He was just being Cameron. Right before
they gave him more medicine he gave me a big giant Cameron smile. He is
sleeping peacefully but the numbers are being slow to move. This is
such a wild ride. Prayers please that his numbers go up & things
settle out ♥ Thank you ♥
His numbers finally popped back up ♥ My ECMO
nurse today had been off work for 5 days and when she came back she said
"I'm happy to see he has improved. It's hard to see it daily but when
you have been gone it's easier to see." The consensus is that his lungs
are a little better, but we won't know for sure until we test them, and
that won't be for awhile. If you test too soon it can set him back.
The doctors tell me "We just have to take one day at a time and after
awhile, the time will be right". Patience is not an easy thing for me
to learn ♥ Thank you for your prayers ♥
All is quiet here
He is holding steady. Today his numbers are
down a little but that seems to be his routine. Hopefully, tonight they
will pop back up. He just good at keeping it interesting. They decided
against replacing the endotracial tube(attached the ventilator &
uses it to breathe) since they don't want to disturb him until he gets
closer to coming off of the ECMO machine. He will be on the ventilator
for a while still after he finishes his
ECMO. They are the combo package right now(ECMO & ventilator). Down
the road....ECMO stops, then later on ventilators. That is wayyyyy down
the road. No big tests or plans today. Dad picked up the twins from
Auntie T & uncle James & they had a great time. Happy New
year!!! Please pray for consistently high good numbers ♥ Thank you for
the prayers ♥
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