Saturday, May 29, 2010

The 411 on Room 635

Hello from Detroit!

So we are three days post op and it's been a roller coaster for sure!!

We weren't even ICU a full day, and we got moved to a general surg/ped floor
because the hospital is so full. The surgery went without any issues and was
about 7 1/2 hours long.

Since ICU we have run into a few issues. She was transfused on ICU, but her Hgb
is slowly coming back up. We have had some real drain issues. The morning in
ICU her EVD was filled with bright red blood so they went for urgent CT to see
if she had a bleed. Everything was post surg appropriate. That damn drain has
been nothing but issues!! She started vomiting in ICU, and when we got to the
floor by bed time she was vomiting " coffee grounds" so she was put on protonix
to treat for stress ulcers. Zofran was ordered as needed. With the coffee
ground issue arose another EVD issue, and what once was clearer CSF became all
blood again. So 2am urgent CT showed really nothing. Since yesterday she has
been leaking around one of her drains, presumably because a clot is in one( most
likely JP). I hear the word clot and freak because of her Factor V issues and
stroke!!! We had some BM issues as well.. She is chronically constipated from
the stroke and straining is a big issue (forgive the TMI). So ICP went nuts
after some result, and EVD went back to
bright red.

I am seeing a lot of twitchy movements, as well as a few seizure-y looking
things. We restarted her Vigab yesterday and she was started on Dilantin post
op. Every time she moves I freak because I don't know how much pain she is in,
was that a seizure or did she jus startle. Seizure waiting as you all know is
torture. And with her drains we have no EEG on sight so the plan is to stay on
the two meds an eventually add trileptal.

Currently she is getting the most and best sleep she has had post op. Yesterday
had to be exhausting for her. We had her out of bed twice so they could change
her bed ( she freaks out when you try to log roll her) so it was just easier
(and of course I wanted my baby!!). It brought back NICU all over again. I
was so afraid to touch her, I had a pillow under my arm, and she was so
uncomfortable at first. Then next thing you know she is pulling herself up from
a reclined position in my lap to sit up. Something she doesn't even really do
on good days! So she sat up looked around and started babbling .. Getting back
to herself. Then she promptly fell asleep. :) I love snuggles, even if I
couldn't snuggle her too right for fear of hurting her.

Neurosurg just popped in, saw she was sleeping and said they will be back for
the JP.

I think the night we were moved from ICU to the 6th floor the hospital
exhaustion/post traumatic hospital stress started to hit. Today I'm more
exhausted than surgery day. I have been doing rather well in the keeping it
together part. I lost it in ICU when I first saw her throw up and the pain she
was in. Yesterday she had a coughing spell and the look of terror and pain on
her face will forever be embedded in my
mind. So much so that I have begun second guessing myself ( or I was last
night). I texted Larry and asked him if I made a mistake by going a head with
surgery. He said this is all temporary and in the long run will be worth it.
After the look on her face yesterday I have doubt in the back of my mind.
Logical part of me knows we had to do it, but mommy part can't rationalize all
the pain she is in and how I put her there.

But enough negativity.. Today she is getting much needed rest, and I am grateful
for that. One more tube comes out today so that is great. And above all else..
I got a smile before they drew her six am labs. A real, big, toothy, very
lopsided now smile. What my heart has been longing for and needing!!

So we still have a few days with the EVD and then I am
not sure where we go from there. I kind of hope to be here doin in pt rehab,
but part of me wants to go home. Her EI therapists miss her so much, and home is
so quiet.. But pretty content out here. I'd move if I could. I love Dr
Chugani, Dr Asano, Dr Sood.. Some of the nurses have been outstanding !!
Others.. Eh..

And that is where we are at right now.


Wendi Taylor said...

The pain will only last for a little while. She will hardly remember it, because she will be so busy growing and developing in ways that she couldn't before this surgery. You are a strong, courageous Mama and she will thank you for it. You are in my prayers.

Lisa said...

I found the recovery process in the hospital to be far more grueling than surgery day. My daughter had her surgery on September 22nd and we did not go home until October 3rd. By the end of our stay we were ready to bust her out ourselves.

My daughter had complications too...a suspected staph infection, fever that wouldn't go away but no source could be found for fact, one of the neurosurgery staff told me that every kid has their own "issue" after surgery, and it's their job to manage it and stabilize it. As scary as it is for us they are used to these scenarios. I know the clotting factor just makes things more terrifying for you though.

Also, we saw all kinds of twitches, tremors, etc. after surgery that scared us to death. One night after surgery (maybe the 3rd or 4th night) she was so tremor-y and the Ativan wasn't working...we were scared to death. The brain undergoes a lot of trauma after such a massive surgery and all of these movements are a reaction to that.

We also had our moments that we regretted putting her through everything. Trust me when I say it will all be worth it. Hang in there!

The Jacob Fund said...

I noticed the Facebook badge... She is so beautiful!

MJStump said...

I just saw Danielle's post with your most recent note on FB. I've been praying for Charli since she first had surgery, and will continue to pray for all of you.

May God place His hands over her little body and heal her. May He fill your hearts with His spirit and give you the strength you need to keep pushing through, for the sake of Charli.

Hugs, love, and prayers,