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Monday, September 15, 2014

Nebraska... again

So I think I just need to write this, get it out there, and be done with it. I don't know why I'm dreading writing it, but yeah... So bear with me if this post is rambly, doesn't make sense, and yeah... Please, please, please feel free to ask questions. We are an open book about most things :o) I'm going to write everything that happened for journal sake and to hopefully help things make more sense. I'll put pictures in between to hopefully help this post be more exciting.
So, we just spent 5 weeks in Nebraska. We went to do some intensive feeding therapy with Breeann. This was our last ditch effort to avoid transplant. So when we got there, Breeann was admitted to the hospital for what ended up being two weeks. They took her off all the medications she was on at home and increased her tube feeds until they hit a trouble spot. Which the trouble spot was the same one we were getting at home too. So after trying a couple of new medications, and the meds not workings, they decided to scope her. The scope showed a tiny bit of dilation and some colitis. So they started her on antibiotics and a steroid... discharged her a couple of days after.
For about a week, she did some testing for feeding therapy as outpatient and we were told to not push her tube feeds, just see what she would eat orally. And her oral took off!!! She loves eating. It definitely helped that steroids increase your appetite too :oP When we meet with the dr. a week after discharge, he told us that he wants to do a venogram on her. A venogram is where they inject dye into the veins and do like MRI images while watching what the dye does. This was done the next day and they sedated Bree for it. When the radiologist came to talk to us, he told us about what we expected. So there's 2 main arteries on each side of the body where they can put Bree's IV. On her left side, where the two arteries meet, there's like a birth defect and that side has never really been good. We can't use either artery. On her right side, one artery is good, the other is bad. So that means we only have 1 of 4 sites to use on her.
Because of no access sites left and we were unable to increase her feeds, Bree's NE teams recommend transplant and sent us home to UT. And I should mention, they wanted to transplant intestine, pancreas, and liver. I guess there is scar tissue starting to form on her liver and they are thinking better safe then sorry. Anyway~ so Jared and I spent two or three weeks fasting, praying, and having extremely hard discussions with each other and our families. In the end, our decision was to NOT transplant. The transplant would not buy us more time with Breeann in this life and it would decrease her quality of life. Hardest decision EVER!!!! No one should ever have to sit there and debate their child's life/death like that. Thankfully, and gratefully, we were lead by the Spirit, made our choice, and told our family and Bree's whole medical team. They were all very supportive.
When we talked to her GI dr. here at Primary Childrens, he made us feel so incredibly much better!! I swear that man is heaven sent and a miracle worker. He told us that he felt like we made the right choice. He said he's never lost a patient because of no IV access site. He said he was really encourage by Bree's oral eating, thinks she'll thrive that way, and is interested to see how it all works out. He's told us numerous times that he's a new boat with us. He's never had a patient that has as much duodenum as she does... duodenum is the first part of small intestine. He also told us too that he wants us to slowly introduce her allergy foods (milk, egg, and peanut). Which I can tell you, she is outgrowing her milk allergy. We see the allergist tomorrow and it'll be an interesting appointment I think.

Bree is doing remarkably well! In fact ... in the last week, we have gotten her to gain 0.4 kg (which is like just over a pound). Breeann can down a whole 8.5 oz can of vienna sausages (thank you Brian and Tawnya for introducing them!!!). She is happy, developing, and sassy as ever!

We cannot thank enough our family and friends who went through that horrible 2-3 weeks with us. They have always been our angels on earth and been there through it all with us. We are so incredibly blessed and grateful for each and every single one of you. Even if we aren't the greatest at expressing it, we do notice and appreciate it more then you can know.
So that's what we've been going through the last half of the summer. Luckily it's over and we're really doing great. Life is good!!! Love to all!!!


KinderTeach said...

It was a hell of a choice Bub. But it's made and you don't have to second guess yourself. You've been an amazing mother to this little girl. Who knows if she would be doing this well if she had any other mother. I thank The Lord daily that her bio parents selflessly gave her up in order to give her a fighting chance. And FIGHT she has!!!

Jeni said...

I can't even imagine making that decision. You guys are such great examples to me. Bree was definitely meant to be in YOUR home. I admire you all more than I can say!!!! Love you guys so much!!

Camber said...

Thank you for sharing this! What a hard, hard decision to make. Thank goodness for prayer. I'm so glad you have such an awesome doctor. Good luck moving forward!