Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

Daisypath Anniversary tickers

Daisypath - Personal pictureDaisypath Anniversary tickers

Lilypie Second Birthday tickers

Lilypie - Personal pictureLilypie Second Birthday tickers

Lilypie Pregnancy tickers

Lilypie Pregnancy tickers

Monday, January 23, 2012

Shots, Upper GI and more

Last week Whitney and I and my mom kept super busy with appointments including Occupational Therapy, Feeding Therapy, Synagis Shot, and an Upper GI and small bowel follow through. 

Being her silly self


Watching Elmo's World on Sesame Street




The OT, FT, and ST are going pretty well. I can defintely see some improvement in Whitneys skills.  It's just a long drive out there but Whitney needs them and I really like this place. 



The synagis shot went horribly. Now normally Whitney does pretty good going to any and every Dr. office, but today, this was different. So my mom came and was carrying Whitney and as soon as they stepped into the building/waiting area, Whitney started crying. A really sad, scared, pitiful cry. Made me want to leave right then. But I know she needs this shot so we continued on. The crying got way worse when we walked in to the room. The nurse was talking so softly that I couldn't even hear her. Whitney then threw up. Yeah she was so scared and screaming so much that she threw up. The nurse asked if she was sick and I just said no she just really scared and anxious. Then she wondered if she'd be okay with getting a blood pressure, that if she just cries it wouldn't work. I said that well she going to cry, but she wanted to try anyway. Whitney freaked out more when the nurse came towards her with the blood pressure cuff. Yeah. Then I held Whitney and she was just shaking so much and only calmed for a minute when I sang a little. Again, second guessing if this was worth it. Finally I brought her over to the bed and she held on to my fingers so I couldn't just leave her. My mom stood there as well to help hold her legs and bam...shot. While looking at Whitney and holding her hands, I finally broke down. My tears gushed no matter how hard I tried to hold them back. Afterwards I immediately picked her up and quickly walked out the door and down the hallway. I think at one point Whitney wondered why I was crying. Then we went back in and the nurse said she could go out in the waiting room and watch the TV. Of course Whitney is still crying and shaking. We finally got outside and let Whitney walk around. My mom said that next time I can leave the room, normally I'm not standing right by Whitney, just this time I felt so so bad and she wouldn't let my fingers go. We drove home and Whitney was pretty fussy the whole time. But my mom feed her and she kept it down! Went right to sleep in her crib when we got home. And me straight to the blog to share my traumatic experience with everyone.

The Upper GI and small bowel follow through was done at Phx Children's Hospital.  After I registered, a nurse came over to put the ID band on Whitney's leg and thats when she started screaming.  I feel kinda bad for all these nice nurses who get cried at, but of course I feel more bad for my baby.  Then they took us back to the X-ray room to get started.  With Whitney crying the whole time, they explained to me the procedure.  We took her clothes off and laid her on the table.  The Dr. first used a water-soluable mixture in her g-tube but it was kinda hard to see.  The took a bunch of x-rays. It doesn't hurt Whit, she just really scared of the big machine and being held down.  She acutally vomited so they gave Whitney a break and after a while she fell asleep. Wimpering and crying the whole time.  When we put back on the table to use the barium in her tube and she woke up and cried some more.  Then we waited out in the hallway for about an hour.  We went back in for one more x-ray of her small intestines and were finished after that.
I don't have the written results but from what the Dr. saw he said that there were no obstructions.  They observed mild delayed gastric emptying.  Her intestines are not malrotated.  Her liver is up a little higher than her previous x-ray but it still looks good and the patch (replacing her right diaphragm) is holding it down pretty well.

 Waiting at PCH for the last x-ray



Gramma with Whitney wanting to leave!


18 months old! and weighs 19lbs 5oz






Being silly! Good view of her top molars coming in!








Good view of her bottome molars coming in



Which one to play with? They usually aren't all nicely put away!



Going down the stairs while holding her shirt up!?

2 comments:

  1. Oh man! Bless her poor little heart! And ooh poor Momma too!! Caleb doesn't have a fraction of the cause that Whitney does and my kid has a full blown phobia of women in scrubs so my heart really goes out to you.

    On the upside she gets cuter with every picture!! She's gonna be a heart breaker when she's older! :)

    ReplyDelete
  2. Oh Alicia, you and Whitney are both very brave! I'm also very glad your mother could be there with you, offering her strength and support as well. Poor girls. Sometimes it's very hard doing the things we need to do.

    My prayers and well wishes are with you, and I'm glad to hear that so far things seem to be going well, even if scarily sometimes. I will definitely agree that she is still so beautiful and such a blessing and miracle! Yay molars! She's grown so much!

    ReplyDelete