Mar 8, 2011

4 night stay in the hotel for sick kids


Mia is currently admitted at the hospital- this is her "oh wow!" face.  Yesterday we got the call that we would need to come in for FOUR days so she could be treated with steroids and IVIG treatments and some added immuno-supressants. 


Mia's immune cell function levels came back at 757- which is way too high functioning for someone with a transplanted heart.  Her level two months ago was 131.  It seems that the last round of steroids only boosted her immune system- and kept her in rejection.  strange.


Today when she got the IV they had to try three times to get it in.  I'm pretty sure no parents should have to participate in this- it was traumatizing! For her and me. You would think I would be used to it. I'm not. It is sad, and because she is so sweet I feel even more guilty for bringing her in for all these "owieeeees."


When the IV was finally put in I was so relieved. Now, Mia won't stop talking about it getting "off." She keeps telling me, "All done owie."  It's going to be a fantastic four days trying to convince her that the blue board taped to her arm isn't going anywhere.


Here is little "Maya"(again, never thought so many people would call her that) innocently sitting on her potty chair earlier this week.  Poor thing just wants to be an at home potty training sassy senorita. 


She is loving the potty chair and kicked it up a notch when we got to the hospital today.  The nurses said that after her steroid treatment she might act crazy.  Let's just say after they brought in a potty chair she has been a potty training maniac. literally running around the room and taking breaks to sit and "try." The most amusing thing about her marathon potty time is how during her lap around the room she will yell, "coming paee chere." Then, after she sits for awhile she will jump up with both her arms straining high above her head and she'll yell... "TA DAH!!!" Then run some more! I am kicking myself that I didn't bring the video camera.  She is killing me!

I have a feeling that we won't be going to bed for awhile because she is extremely energetic.  It is now 9:30 and she is usually in bed by 7:00, and showing no signs of stopping. Currently she is playing tag with my parent badge.  She tosses it across the room then yells, "come get me!" Then gasps like someone is chasing her.  Then she picks it up and starts all over again.  This is like play time... on steroids. (hardy har har)

10 comments:

Photographer: Rebecca Pierce said...

Those numbers are shocking. Makes me wonder what really was in the medicine they gave you guys...like that is insane. Hmmmmm. Well I'm glad she's happy at least, and that the IV is IN (though is it just me...it seems very pull outable). I'm so sorry you have to be away from home and that she has to have any owies at all, ever. I can't wait for her zero rejection news in a few whatever, however long they told you you had to wait to find out...I'm glad she has her cozies from home. Get some sleep...

Anonymous said...

Sooooo sad :-( I am always amazed, however that you remember to capture those moments on camera. Even her getting her IV and all. When she is 102 and she is looking back at all she has been through to make her stronger she will realize through those pictures all that she has endured and overcome. You are an amazing mom and you have amazing support and I am thinking about you guys.
Keep on keeping!
BIG LOVES!!!
Lauri

Kaidence's Mommy said...

So Sad. Hey, They IVIG seemed to make Kaidence sleepy. It would take a while to crash, but then she would. Maybe its the Benadryl they pretreat her with. Maybe you can sneek in a nap :)

Kyle and Alli said...

Sorry to hear that you are all back in the hospital! Yuck! Props to you guys for continuing potty training while at the hospital. Hopefully her steroid energy can push her along in that department!

jayna said...

OH poor girl. And parents. Sorry guys. But you're capturing this story excellently for Miss Mia to marvel over as a grown-up. Good luck and lots of love.

Dan and Sara said...

Thinking of you and praying that sweet Mia can get out of there soon!!! xxx

The Hands said...

Glad little Maya can bring a little brightness to your down-in-the-dumps day. ;-) I had to laugh at the potty chair race.

Brimaca said...

She is hilarious! Such a sweet girl. Man, I had to watch my little guy get 1 IV and it felt like torture. I can't imagine....

tyalpabr said...

She is such a beautiful little girl! Mia is so brave! I hope you know our prayers are with you and your sweet family.

Shelley Eggett said...

Those last two paragraphs gave me a good laugh. Atleast she's making the most of the situation right?

Praying for her and you, and I can't believe you are moving back to Utah....so exciting.