So far the ECMO seems to be going okay. I think the goal is to see
where we are in a week. Hopefully the rapamiacin will be working and his
lungs will have healed enough to come off. The longer ECMO is used to
more risky it becomes. Things like blood clots and brain hemmorages can
occur and time on the machine seems to make them more likely. Every
person seems to have their own ECMO limit. J has two nurses in his room
at all times. One is in charge of ECMO and the other takes care of
everything else. He gets labs run many times during the day and the
amount if information and the number of machines in the room are mind
boggling.
We started rapamiacin today and his hematologist is optomistic yet understandably nervous. As are we.
We
also had birthday cake today. I'm hoping that got us off to a good
start with the staff. Especially since we have yet to buy nurse candy.
We'll get there. But seriously- cake. Auntie K ordered this raspberry
marble cake decorated with dinos and it was awesome. She went all out.
We sat in the family break room and wore party hats and crazy sunglasses
and sang happy birthday. We didn't do it in the room- partly because I
think it is a cake-free zone but also because Little Man came down and he
can't see J like this. It is just too much.
Hubs and I are both
exhausted yet not really able to sleep. I keep pacing- I should have
gotten a pedometer when we arrived- I have probably walked miles in the
PICU hallways of both hospitals already. So far no one has kicked us out
of the room we slept in last night...maybe the cake will get us another
night or two. Everyone here is awesome and they seem to be doing a
great job taking care of my sweet Jameson.
Thank you all so much
for your kind words and prayers. I often find myself checking email,
facebook, and the guestbook when I need a pick me up. It helps to see your
support and know we aren't struggling alone even when we feel like it.
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