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Monday, September 28, 2009

Monday evening update

I am sitting in a dark and quiet room at 920pm, and Gabriella has been in a super deep sleep for about 3 hours. She has always been a heavy breather and is doing it right now as she gets some much needed deep rest.

Physical therapy was interesting, for sure. She was awfully angry at the therapists, because she was still so tired from the morning and didn't want to exert her energy. They eventually got her to sit on the edge of her bed for a moment. She was frustrated and mad. They got her onto the bedside potty and she tried to go. When they got her up, they had her stand. Gabriella, being her strong-willed and sassy self, walked herself with minimal assistance to the bedside. She wanted back into bed so much she got herself there! Praise God for leg strength!

The therapist said first things first, she wanted the arm board off her right arm. I was totally in agreement.... if her movement is going to come back at all, it won't happen strapped to a board. The nurse got it off this evening, and it is great to see her little "lazy arm" free.

The in-patient rehab doctor came by to qualify Gabriella for therapy once we are out of PICU. Gabriella must have had a crush on him, because she was smiling and showing off her little talents. HE made her happy, and she responded well to him. I hope he comes in daily!

The swallow test was easy peasy. When we went into the room she smiled and nodded her head. I knew immediately that it mean "I've been in a (x-ray) room like this before! I know this isn't bad". She sat in this chair, as I fed her multiple consistencies of fluids. The real-time X-ray took a picture of where the fluids were going once swallowed. Thinner liquid was going to her windpipe area before making it to her esophagus, but thickened fluid went the right way. They are going to start her on a pureed diet soon, and slowly work on soft foods. Once the muscles regain some strength, we will work on thinner fluids. And hopefully stronger mouth muscles mean some return of some speech or expression. I so desperately want to hear her voice. And I want to hear EVERYTHING she has to say about what has happened the past few days.

We are mastering the art of communication. It is much like a newborn baby, in that I need to read her signs and habits to know what she needs. We are using simple signs for nausea, potty and more. I am also able to understand what she needs or wants based on how she was pre-stroke. It is simple to figure out what she is thinking, and we try to enforce that we acknowledge when she is mad or upset or frustrated, so she doesn't feel she is alone in her feelings since she can't express them. Tonight we caught her staring at a picture of all her little cousins. We asked her if she missed them, and she nodded yes. It was a hard realization for her this evening, but she will be back with them in no time. And I know for a fact they will love on her and be patient with her new way of play.

So as I said, she is sleeping deep. We just took her potty and she is back in bed, not missing a beat of sleep. We got checked into the on-campus RMH so we will be utilizing that. Paul will sleep there, and on occasional nights someone will come and bring PJ to sleep there also. I will shower there and maybe nap on a slow day..... but most likely not. Who am I kidding? I hate leaving her side to use the bathroom or grab some water.

Although I have nothing to complain about compared to the complaints Gabriella must have, this PICU room is freezing. During the day it is around 69 but I swear at night it is 60. We are going to watch the temp gauge tonight to see what it drops to. We have mastered the art of wrapping ourselves in blankets like burritos just to keep warm! Just had to whine a bit... but its cold. So someone smack me for always complaining about how hot Arizona is. Hahaha

Praying for a not-so-busy but just-as-productive day tomorrow!!!!!


Nikkie said...

I'm so glad to hear you had a relatively good day. I can't believe she walked!!!! I am so proud to know your sweet Gabriella!!

Juanita said...

so glad to see that Gabriella is up and about. Poor baby it must all be so scary and frustrating at times. Kristi you are such a great mom. Hang in there.I pray for your strenth as well as Gabriella, you help to make her strong along with all the prayer.

cici said...

Never understood why hospitals are so cold. Maybe to avoid germs from growing?or Keep the Doctors and Nurses awake?
I am so happy to hear that Gabriella is making such good progress and you are there for her understanding her needs.
I will put all of you on the prayer intention list again, so God will be sure to hear us loud and clear.
God Bless you and sleep tight tonight mama.

Teresa said...

WOO-HOO!!! GO GABRIELLA!!! You are such a strong little woman of God! We love you!
The Hillises

Mommy said...

I am thinking of all of you. The updates are warming and I love hearing the progress your child is making. She will do just fine! She made the weekend and improved so greatly, that is the best news I could have heard about her. God Bless you all!
Love, Joyce Hall (Amy Shepherds Mom)

Megan@SortaCrunchy said...

YAY PRINCESS G!!! This is such AMAZING news. I am so proud of her. I know she must have been just tuckered out last night. I can see God's Hand in all of this. All glory to Him for His amazing work of healing!!

Take care of yourself, too, Kristi. I hope you are managing to sneak in some ZZZZZZs every now and again. I know there is no way I could leave Dacey's side if we were in the same situation. I hope you are able to do some little things to keep you going.

Hugs, kisses, and prayers . . .

Comfypjs said...

Kristi you do not know me but I am praying daily for your little princess and have asked my church to do so as well.

Tasha said...

Woo hoo! Awesome report! I am so glad to hear that she was able to walk herself back to bed!

We were told they keep the ICU areas cold to prevent the growth and spread of bacteria. The colder it is, the less likely it is to grow and spread. The NICU is freezing too. I kept a hoodie at Bree's station for when I was there. It helped. :)

Mary Ellen said...

So glad to hear Gabriella is regaining some strength! Thanks for the updates. We're keeping y'all in our prayers.

Mary Ellen

Corey~living and loving said...

such good news.

my heart breaks wondering what she thinks of all this, and how confused she might with her body right now.

I'm thinking of you all.

Anonymous said...

Hi Gabriella and family, you don't know me, but know I will be praying for Gabriella and all of you guys that are going through this with her. Also know we have an awsome God, and He can do ALL things. And He is watching out for little Gabriella, and we may not know why she has to go through this but God will use her tremendously! Its seems like HE already has! He has an awesome plan for her life! She is a special girl:D

Unknown said...

Oh I'm so glad to hear she walked and is getting some good sleep. That's gotta be the best thing. Thanks for updating so often, you are just amazing! God shines thru you Kristi, and your hubby.
We put you on the KLOVE prayer chain too, dunno if thats already been done or not but we did it again, God knows.

The Simmons Family said...

I'm glad to hear that she has the "sass" in her still. It will really help her get through all the therapies.

I'm glad you got a room at the on campus RMH. It's hard to leave her side, I know. Isn't it aweful to walk by some of the PICU rooms and never see a family member.. it breaks my heart.

Oh.. you can tell your nurse and they will call to have the room temp changed to whatever you want.. just an idea. :)

Owen was at Cardiology today in Mesa and they sure are thinking of Gabriella!!

Good luck and can't wait to hear what today brings.

Unknown said...

Your recent account of Gabriella and her progress sounds so much more upbeat Kristi - I've never ceased to be astonished at how incredibly brave sick children are, and little Gabriella is one such child. Don't be afraid to get some sleep breaks and a little 'you time'. It's important to take care of yourself so that you can go on being there for Gabriella. Thoughts and prayers are with you.
Bernadette (in Ireland)

Anonymous said...

Hey Vega fam so happy to know baby G is showing progress. My boys are well aware of G we explained it to them at G fundraiser so I asked them to say a prayer 4 her tonight before they go to bed. =).... Cant wait for baby G to get better...