Never been So Scared!!

Well a lot has happened in the last few days. Kaden had a horrible
saturday and we really started to believe surgery would not happen So
we had Kaden baptized Sunday night. Well monday morning he self
extubated, but more importantly his very severe heart murmur was
gone!!! Even crazier is the fact that Kaden's Ecmo flow was past maxed
out at 320 (his max is 300) and they weaned him that day to 260 and
then to 200. Kadens Echo with and with out No2 (he had 2 done) did not
come back good. But b/c we could wean the ecmo they said surgery is
tomorrow morning. They actually let me hold Kaden from 2-3:30 today,
yes on ecmo. They promised I could hold him alive at least once, I
asked that of them. I said if there is a chance he wont make it,
please let me. Dr. Stork said Kaden must come off ecmo after 24hrs of
surgery. If Kaden makes it through surgery. Even scarier they told us
that they do not think Kaden will make it without the ecmo. They said
unless the surgery stops the pulmonary hypertension and there is some
left lung then Kaden won't make it. We are praying so hard. I'm sure
all of you who have been through this know how serious this time is.
We have a lot to be worried about. First there is getting him to
surgery on ecmo. Then there is the surgery and building him a new
diaphragm, while trying to not let him bleed to death or have bleeding
on the brain. Then there is the patch or bag for his abdomen sense it
all won't fit. After that they will have to take him back to his room,
and try to start weaning him off ecmo and we have to pray that he wont
bleed to death or have bleeding on the brain still and pray he can
make it without ecmo. Please pray for Kaden through surgery (it's at
8am this Friday) and then lots of lung function chants afterwards. I
am a mess. I have never been so scared. I don't know what I will do if
I lose him. I am having the Rev. come tonight and tomorrow to see him
off to surgery. We told Kaden why he must come home, how much we love
him and everything he has to look forward to. I hope he liked the
sound of all that b/c we want to see him enjoy it all. Everyone on the
Nicu floor is praying and they are all scared to. The staff is so
wonderful. I must go and spend more time with him now.