So, I've been MIA for awhile and I am sorry. I have come on the
computer to write this and the tears start flowing and I have to leave. Why is
it so hard to write about your day/week? There have been some major happenings
with Amelia in the past 7 weeks.
July 30th Amelia had a big surgery. She FINALLY got a plate put
in. The surgery went better than expected because her PS and NS were able to
shift her brain over and she doesn't have a bulge anymore. This is big because
now she won't need as many reconstructive surgeries as anticipated and we can
wait a few years before needing to address anything. Her head is actually
indented, when it's not filled with fluid. Yes, you read that right.
Amelia had a rough time after her surgery. Normally she is in the PCCU
for 24-36 hours and then we are in a regular room. Her head wouldn't quit drain
blood for almost 5 days. They finally removed the tube because it was a bigger
risk keeping it in. For over 5 days we were not allowed to hold our child. That
was rough. I wasn't sure how I felt about them removing the drain, but needed
to hold my sweet baby girl. The fluid pooled on the top of the plate, but her
NS assured us that it was fine and normal and in a few days it would go away
via the shunt.
We were discharged on Wednesday, Friday we were in the ED.
She kept running a fever and it wouldn't break. They were pretty certain
it wasn't a blood infection or CSF infection but because she had something
going on she was admitted. We saw her NS Monday morning and she had surgery
that evening. He did a shunt revision, replacing the catheter that goes into
her head. He also drained her head. Things seemed to finally be looking up for
us.
We went home Tuesday and that evening Amelia got sick for the
first time ever. She was lethargic and not herself. We watched her and by
morning she was doing better so we just kept watching her. A week passed and
her head finally started draining on it's own. It was pretty much completely
drained for a few days and then all of a sudden it just plumped back up. Her NS
was in Europe and unless it was an emergent matter they wanted us to wait for
him. Amelia is such a rare and unique case it is better, even for just a shunt
revision which is a common thing for NS, to have the person who has been with
her since the day she was born.
So we waited, and waited. She had a CT scan on the 1st of Sept and
we were scheduled to see her NS on the 10th. When we saw him he already had her
being scheduled for surgery for the 16th. He changed the setting on her shunt
since her ventricles are so small in hopes of increasing the fluid that goes to
her shunt rather than coming out and sneaking on top of her plate. He we hoping
that would do the trick. If not, surgery. First goal was that the shunt wasn't working.
Then it would be an easy fix and he would know the problem. If the shunt was
working then he would put a tube on top of the plate and tie under the shunt so
the fluid can drain straight down. Worse case is that none of these things
work. Then he will have to go in, with her PS, and remove the plate, figure out
where she's leaking from, try to fix that, replace the plate, and pray that
works. I am glad there are plans just in case, but praying we don't need
them.
Surgery was yesterday. She did great. Her catheter wasn't flowing
as it should have been, not completely blocked, but on its way. So he replaced
that. He also doesn't want to be back in the same situation in a few weeks, so
he put the tube on top of her plate and tied that in. We are now praying that
there will be no more fluid collecting. The longer there is fluid there, the
longer it will take her skin to stick to the plate and do its job. This morning
there was fluid starting to build, so we have to wrap her head all day and hope
that it pushes the fluid out.
This little 21 month old precious girl went through 3 brain
surgeries in 7 weeks. That's more than anyone should have in a life time. The
surgeries are starting to get to her. It's taking longer to recover. I am
hoping that she is going to be back to herself soon, because these past 7 weeks
have not been fun. We do try to do things with her, like go to the zoo (where
she was kissing a goat lol), but it's hard when she doesn't want to do
much.
On top of all the surgeries she was also dxed with chiari
malformation. Now this is a condition that a lot of people have, but would
never know unless they got a MRI. For Amelia, she has chiari I, which is what
is common with people. Hers has just developed, as she has plenty of MRIs to
look back at. Right now we don't need to do anything with it. Basically, her
brain is starting to grow down her spinal column. Since hers is just starting
no surgery is necessary. We will continue to monitor it. Hopefully with
shifting her entire brain during her plate surgery will do enough to help
maintain this and it will not progress to a higher level.
So that has been our past 7 weeks. Lots of time in the hospital,
lots of cuddles (or cuggles as my bug calls them), and lots of Oh Maria from
Sister Act. Yes, my child loves that song. She refuses to really watch tv or
movies, but put that on and she sings and claps with them. She sings along,
hits long notes with them, double claps with them. It is so cute!! She also
will pray now on her own. "Dear God, thank you food, mama, daddy, help
walk, amen" Sometimes when she is really hungry it is "Dear God,
walk, amen" I so love this little girl.
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