Wednesday, May 18, 2016

It's Coming, Whether We Like it or Not

I've kind of been in denial about this next surgery, and I'm not sure why. I know she needs it and for the most part, I know what to expect.  But I've been putting off pretty much anything related to surgery.  If I ignore it, it will go away, right?

Wrong.  Which is why I resignedly began packing yesterday.  You may think that is early, considering we don't leave until Saturday, but a lot is involved whenever we go anywhere.  I have to update and print multiple copes of her health history, gather medical equipment and supplies, hunt down specific clothing that she is able to put on easily post-op, collect toys and activities for her to do, get Caleb packed and organized...so there's a lot.  Plus, we are pretty busy the next few days and yesterday was when I had the time to get a good start on it.

To quickly summarize this surgery:
*  We leave Saturday and will attend a Thoracic Insufficiency Syndrome family day on Sunday.
*  She will get her PICC line placed on Monday morning and will then be admitted.
*  Surgery will be first thing Tuesday morning (probably 8 a.m.)
*  They will be putting in two long rods this time that will be attached from the top of her ribs to her pelvis.  This will stabilize the hump (kyphosis) that has gotten progressively worse.
*  We don't know exactly how long she will stay.  Her last insertions were both 8 days, but she only had one side done at a time.  This will be the first time she will have both sides done.  (That is tentative of course--there's a lot we won't know until Dr. C. gets in there.)
*  After we get home, we expect it to be about a month before she is fairly functional, and another month before she is back to her baseline.  This is again based on how she has done in the past.
*  We will start back up with intensive PT as soon as we get back home.  We love her new therapy center and have been really impressed with what she has done so far.  She's doing PT and speech there and loves it!

What to pray for over the next few days:
*  Abby has a lot of anxiety about this surgery.  This one is really getting to her as she is becoming more aware.  It's impossible to explain to a 5 year old who isn't "sick" why she has to go through all of this. 
*  I threw my back out last Thursday and have been in pretty intense pain since then.  I am going to the chiropractor, using ice, and taking heavy duty Motrin, but the pain is still not under control.  Sleeping on a hospital couch isn't going to help things much.
*  Caleb internalizes things his own way and struggles with anxiety in general.  We are trying to reassure him and give him opportunities to ask questions.  He's staying with my family and they are awesome about keeping him busy, but it is still hard on him when we aren't there. If you see him while we are gone, give him a hug!

Thank you, prayer warriors!

2 comments:

RicKim said...

We are praying for you all! We love you very much!!

Raelyn said...

Julie....
Prayers and hugs!! ;)
"Stay hard, stay hungry, stay alive", Raelyn