Tuesday, December 22, 2009

Big Turnaround

What a difference a day can make. Yesterday at this time Carly was in a very critical state that had everyone worried, including the medical team. Her temperature was up to 104F, her heart rate was 220 beats per minute, her respiratory rate was 105 breaths per minute, and her pupils were unresponsive to light. Around 10pm everything started to settle out and by midnight all of her vital signs were back within her normal range. The team ruled out a shunt problem, and although some blood cultures need a few more days to finalize they are pretty certain that the symptoms were not caused by an infection.

The latest thought is that Carly was suffering from something called paroxysmal autonomic instability. This means that the autonomic part of her brain which controls critical vitals like heart rate, breathing and temperature basically got out of whack and worked itself into a state that it could not recover from. This is something that Dr. Gupta has seen with patients that have had brain injury, and it can also occur with someone who has had surgical procedures like Carly. He said that he has not seen it to the extent that Carly suffered from last night, but added that typically it is a transient occurrence that people eventually grow out of. The symptoms looked very similar to what Carly suffered from during our month long stay in June, but they have never occurred at any other time. Most likely Carly's body was pushed too hard with everything that she has gone through here and her brain could not compensate. This also means that it is not very likely that we will see something like this on the outside.

The best news from the day is that Carly nursed for the first time in over five days. This is always her sign that she is starting to feel better and it certainly makes Christa and I feel relieved. She slept for most of the day, catching up on some much needed sleep. If she can continue this trend there is still a chance that we will be able to go home by the end of the week. While that would be an amazing gift, just seeing Carly feeling better is all I could ask for. (Ok, I'm asking to go home too.) This is yet another experience that is harder than anything we thought we were prepared to handle, and we have no doubt that you have all given us the extra boost we have needed to make it though. The love of many with a shared focus is a powerful force.

Love, Brad

22 comments:

Susan said...

The miracle of life...I am in constant awe at how much strength Carly has inside her. Sleep well, all of you!

Love,

Susan

Dennis and Kathy said...

Yea - miracles will never cease. Get some much needed rest - all of you. Love, Dennis and Kathy

Anonymous said...

HALLELUJAH !!! D

sheila said...

AHHH, SUCH WONDERFUL NEWS!!! So glad to hear this. Man, I think we need to invent some new adjectives to describe Carly because common words don't do her justice. We are always thinking about you three and sending you love and prayers. I hope that each day is better than the last and that you get to go home soom.
with lovelovelove,
sheila and keith

Olivia said...

I am so happy to read some good news. I haven't commented much but continue to pray for Carly. Healing and blessing and love, O

Heather and Seth said...

Big sigh of relief...glad to hear that things are turning around. Sending big hugs and love.

Anonymous said...

Great news, and what a relief!! She is a little miracle baby for sure, and I hope you get home this week.

Jen

Brian said...

Yessss, some good news. What a relief, after what sounds like another terribly scary experience. We're so happy to hear the news and continuing prayers she'll remain comfortable and stable so you can all be happy on Christmas (and maybe home too) to start the next phase of healing.

All our love, Becca and Brian

Jeri said...

What a relief after such a scare. Sending positive thoughts that all this will end and you can get back home to enjoy the holidays.
Love, Jeri

Paige said...

The words "transient occurrence" have never sounded so good! Glad things are looking up and hopeful that you'll have both a healthy Carly and a happy homecoming by the end of the week. xo

Jane said...

So happy carly is feeling better! Sending you all so much love. Please give her a big kiss for me.
Love, Jane

Anonymous said...

Wow, I am so glad that scary night is behind you. Look forward to talking to you guys when I am back. prayers for you as always.
Love, Kellie

karen said...

What a resilient little girl. I hope you get to go home very soon!

Sarah said...

i'm so happy to hear she is eating and starting to feel a little bit better. i hope she continues to feel more like herself and that you get to go home soon! love to you guys.

sarah

Maya said...

This is such wonderful news! We hope that you get your Christmas wish and are home for the holidays. You and Christa are such dedicated parents - you are an inspiration to me!
Maya

Marybeth said...

So glad to hear such good news! So happy she's feeling better & hoping you will all be home soon.

Tooley said...

This is such great news! I am so happy for you all that Carly is feeling better and my deepest wishes are for you all to be home as soon as possible!

Unknown said...

wow - I was holding my breath reading the post - so so happy this is the past!! bravo little one!! and of course bravo mommy and daddy.
We all send our very best. love,
Srinka +Jack +Kiran

T-Rex said...

great news!
go carly go!
xoxo

Unknown said...

We are thinking of you all and wishing you holiday love and light. Big kisses to Carly and her strong strong parents. Here is to a beautiful new year!

savannah said...

Carly is such an amazing little girl - hoping the worst is behind you and you will be heading home soon. Love, Savannah

Lani said...

love you guys
xo