What a day!

What a long and exhausting day for Carla!  She is whooped and sleeping like a baby!  Woo hoo!  The day started at 6:00 a.m. with Carla waking up and trying to tell the nurse a story.  Shortly thereafter it was Physical Therapy and Occupational Therapy, rounds, followed by Speech Therapy coming up with some food for her to try to swallow (and then recommending a formal swallow study).  Carla took a short nap and then it was off to the swallow study (which we were very thankful to get in to, because we would have otherwise had to wait until Monday).  Carla did really well on all the foods except thin liquids, like water, broth, etc.  We can thicken up liquids for her to drink though.  The docs ordered that she can have a "soft food" diet.  That being said, she can now officially eat gravy as a meal, if she wants to!  Funny story... the other week we gave Carla some turkey, mashed potatoes and gravy.  She ate up the gravy up and asked for more.  Her Dad explained that gravy is not the "food" it is just extra, for flavoring...she wanted more gravy.  So, like I said...now, she can officially eat gravy as her meal if she wants to ;)  After Carla's swallow study today we had a visit from pharmacy, followed by a visit from one of the transplant coordinator nurses, the resident doctor, speech therapy again and the wound nurse. Holy busy day!  Pharmacy and the transplant nurse wanted to talk about our transplant training that we will get started on Monday; the speech guy wanted to show us how to thicken up liquids; and the wound nurse wanted to take a look at Carla's poor sore bummy!  Ohhh her bummy is literally bleeding because of all the pooing she has done  :(  They changed her bummy cream treatment again and said that it should clear up by Monday.  I think that eating some regular foods will help her a lot!  So, today she ate: a 4 oz cup of strawberry yogurt, some noodles, some thickened apple juice as well as a few bites of mac and cheese.  She is also on full feeds.  After all of that we decided that Carla's bum would benefit from sitting in a tub of water.  So, we had the nurses bring a tub and she just sat and played for quite a long while.  After the tub we dried her off and had her walk around the room a little bit.  She walked from one side of the room to the other, with Bobby and I close by but only holding her hands for support... after I let go of her back and took her hand, she smiled, proud of herself that she was walking without help.  We let her bum air out a bit, brushed her teeth, had her go potty on the big girl potty before getting her melatonin and totally zonking out for the night.

I have a feeling she will be switched to just eating by mouth shortly.  I also have a feeling she will be getting back to her usual self shortly as well.

Right now Carla has moments during the day where she is so extremely frustrated!  It's hard for her to control her mouth, so she can't kiss us (without sticking her tongue out or having a really hard time).  She can't take liquids from a cup, suck out of a straw or blow bubbles...and if she tries to, she just starts crying.  We keep telling her it is ok, it won't be forever and that she will get better and we are here for her.  It's pretty heartbreaking to see her so frustrated though.  It will be so nice when she gets her abilities back.

Here are a couple pictures... lets pray for another wonderful day tomorrow (maybe a little less busy though).  Love, Jen

Playing in the bath :)

Snuggling up, after bath time.  


Sue Peterson said...

Yahoo! So glad to hear things are going better!

Angee and Thom said...

I need a nap after reading about ther day! Carla is going forward and not looking back. She is so beautiful

Anonymous said...

God bless you guys! She looks wonderful and happy! Thanks for the updates!

The mom of 4 monkeys! said...

Oh she looks so much better! Yay Toot! Love that girl!