Sunday, June 28, 2009

When Brynnah developed pnemonia they had to keep her very sedated...but at least her bows are cute right?

Ryan's stomach post-transplant.
Brynnah was really excited to "wash" her hands after surgery!
The staff made this poster for Brynnah...I thought it was sooo cute!

This is Brynnah right before they wheeled her back to surgery.
I got Ryan a TRANSFORMER for his post-transplant present...I gave it to him before the transplant...he was a little nervous!
I asked him if he needed the instructions to figure out how to transform....he said no...but I caught him consulting the instructions!

Here's Ryan's stomach pre-tansplant....
Brynnah had labs drawn before transplant. The lab techs spoiled her just a little! She thought she was really cool!
I made sure that Brynnah had her nails painted pretty before she went in for surgery...she thought I needed to have mine done too!

Saying HI to daddy!

Wednesday, June 24, 2009

update

Sorry it has taken me soooo incredibly long to finally get you all updated! life has been just a little more than crazy right now! As you probably all know Brynnah did have her transplant on Wednesday the 17th. Ryan did incredibly well. He was up and walking in no time! he really is "SUPERMAN" (I brought him a card and a balloon with superman on it) I'm so proud of you babe!!! He had a hard time getting out of recovery. He was on a ventilator for about 4 hrs. He was also on O2 for a couple of nights...but his O2 is great now and he's doing pretty well. He got released on Sunday, but had a really tough day! He was really sick to his stomach from the pain meds. His incision site got infected a little bit the other day. We took him to go get it looked at and they re-opened the incision and dry-packed it. He sent me a picture today and it looks a ton better than it did. He went home with his parents yesterday and is hopefully resting and taking it easy. Now.......the baby's update. She is having a really hard time with her breathing. She came out of surgery really well but was still on the ventillator. She developed viral pnemonia, which really can't be treated...she also had minor infection where her breathing tube is but they put her on antibiotics and everything looks better. They are trying to figure out what to do with her. The kidney docs want her to have a lot of fluid so the kidney doesn't go into shock. The regular docs want to "starve" her so that the lung infection can get better....one way or the other they have to do a sacrifice. The docs put her on a new ventillator that does all the breathing for her which is a bummer because they also have to keep her completely sedated. All of her labs have been really wierd and kidney function is going down. They have her on insulin because her blood sugars are really high. They gave her blood yesterday and she of course has tubes EVERYWHERE! They are also worried about her heart...the problem that they fixed when she was born looks like it's acting up so they are doing a lot of chest x-rays. The cardiology docs said they are fairly certain it's because of everything else that's going on right now...all the problems she's having is causing the heart stress and making it work harder. I talked to the doc not long ago and said ultimately if they have to choose they would rather see her on dialysis than have her gone....I think that's the best thing i've heard in a while. We had a really scarry episode on sunday...she decided she didn't want to breathe and her O2 and heart rate plummeted....they almost had to do chest compressions. Isn't it AMAZING all the technology they have now! I keep her very fashionable her nails are painted hot pink with sparkles and she has "hello kitty" ribbons in her hair. I'm so greatful for every moment i have with my sweet girl! I'm so thankful that she's stable now and everything is ok for now. I will keep you posted if anything else comes up. I'll try to post some pictures soon! Thank you so much for all your love, support and prayers. I know that Heavenly Father is answering those prayers and loves our family. thank you , we love you!

Thursday, June 4, 2009

UPDATE

So....we are just over a week away from SURGERY......YIKES! I'm totally nervous so thanks to those of you have been a huge support for me! We met with the "Make a Wish" foundation this afternoon and Brynnah was approved for a trip....so we applied for SanDiego zoo/Seaworld. It will be happening in October of this year! We are sooooo excited! They pay for EVERYTHING....flieght, hotel, food, spending money the whole bit...what a great foundation right??? It will really give me something to look forward to! They are also sponsoring a walk for Brynnah in Pocatello the day after surgery...the 13th which is a Saturday. It's at the old town pavilion (where they usually have the farmer's market) it's $15 per person and you get a t-shirt, bread and milk will be provided. It's a 3 mile walk through historic down town area. It will be at 9:30 am (the walk will officially start at 10 am for those who have already pre-registered)for pre-registration or you can register online at idahowish.org and click on walk for wishes. The proceeds are going for Brynnah's trip. It's a really cool thing and those who can participate please do it would be a great help! Thanks again to those of you who are thinking of us, praying for us and putting our family's name in numerous temples! You all are wonderful and we are so blessed to have such fabulous friends, and family! We love you