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Saturday, May 31, 2014

Nebraska

Let me start out by saying, I may not explain things very well in this post... if you have any questions, please feel free to contact me. Also, I'm adding quite a few pics., so I'll just write short paragraphs in between :oP --- Breeann and I recently spent about a week in Omaha, NE. At the end of March, we found out that she only has one IV access site left. Her team in NE asked that we go back and to have her re-evaluated for an intestine transplant (she was evaluated last year).
On the plane going to NE
So an intestine transplant evaluation is an extremely long week of testing and meetings. Strong little Bree handled it like a champ... for the most part. As long as we didn't make her hold still she was okay.
Waiting for the nurse to come take some blood
In the end, her team decided to be as gracious as they could. She is NOT listed for transplant YET!
waiting for a barium enema
They decided to give us two months to increase how much she gets through her feeding tube and how much she takes through her mouth.
fell asleep during the echocardiogram
The reason they are pushing that is because... with her frequent line infections and with her now having only one IV site left... we have to get her IV out as quickly as we can. If we aren't successful at being able to take her IV out for good, that just proves her intestines are THAT bad and she needs the transplant. And with one site, we don't have much time to waste to decide.
making sure the abdominal ultrasound was okay 
Her NE team is really encouraging us to come back so Breeann can be part of a two week intensive, inpatient feeding therapy program.
just being cute
We're still doing "homework", deciding if that's what's best for her and our whole family. As I write this, we aren't sure what goals we have to meet and we also don't know what exactly they'll do for her in that program that we couldn't do here at home.
waiting to go under anesthesia... while she was under they did a colonoscopy, EGD, and MRI (which should've been a MRV, but somewhere, someone got mixed up. oh well)
Since we've been home, we have been able to increase her tube feedings by a teaspoon an hour... and ... i'm too tired to do the math... but she now gets an extra 2 ounces, 4 times a day.
upper GI
I really think our main problem is going to be getting her to eat more. I don't know if it's her strong personalty, if its because she has no hunger drive, or what... but it is harder then pulling teeth to get that girl to eat!!
fell asleep while i was eating lunch the last day of appointments
And it doesn't help that she's limited with her allergies and... so with her SBS, she can't tolerate too much sugar. Like, even almond milk has too much sugar for her.
on our way home!!
So... in short, this summer will be an interesting one for us. Hopefully it'll all work out how we want it too. But to be honest, we're prepared for her to get listed too... well, as prepared as you can be.

OOOO!!! So I end this post on a bright now... this little angel has FINALLY decided to be a full time walker!!! Every once in awhile we catch her crawling, we tell her to stand up, and she will start walking for us. She's a strong, determined little angel. 

3 comments:

cindy baldwin said...

"As long as we didn't make her hold still she was okay." That made me laugh out loud!!! I so understand. ;-) we're praying for you guys and we love you! Kate came in while I was reading this and got very excited to see pics of Bree!

Jennifer Ashton said...

What a strong little girl!!!! She is absolutely ADORABLE!!! AND SUCH AMAZING MOM AND DAD!!! XOX

Jeni said...

Oh how my heart goes out to you guys!!! Prayers your way and we are fasting your way. We love your sweet little angel. Lots and lots of love to sweet Bree and the rest of you!