Tuesday, June 26, 2007

Rocky Mountains??

I'm sorry I haven't been able to update lately. In case you didn't know... The Dr's decided that the Ross procedure (the valve replacement surgery) wasn't going to do enough to solve Noah's heart condition. There are just too many problems with his little heart. They gave us two options; Do nothing and he wouldn't survive for long or have a heart transplant. As you can imagine, doing nothing wasn't an option. We decided to have him get a heart transplant. It's scary and risky but the odds are so good and he will be able to have a normal life and even play football if he wants. He will need to be in immunosupressant drugs the rest of his life but we can manage. People do it all over the world.

The catch? Primary Childrens doesn't have an active heart transplant program at the moment. And even if they did, they stopped doing infant heart transplants a long time ago since too many babies died waiting for a heart. We were given the option of transferring him to Loma Linda, California or Denver, Colorado. My Dad's cousin has had a heart transplant and knows lots of people in the same position. She had good things to say about Loma Linda and we had pretty much decided to send him there. But then we prayed about it and Heavenly Father said Denver.

Noah was flown by Life Flight Friday afternoon. Shane, Lilly, my sister Jennifer and myself packed up our stuff (very quickly since we weren't given much advanced notice) and left Friday around 6:30. We got into Denver about 3:00 am. We had been staying in a Halfway House sort of place affiliated with a local Hospital over the weekend waiting to get into the Ronald McDonald House. The room was SO small and cramped. We hoped we wouldn't have to stay there for long. Then, yesterday, I took Shane to the airport to fly home (he has to keep working so we don't lose the precious insurance!!) and on my way back, the Ronald McDonald house called and said there was a room available if we could be there within the hour. You can bet we were. After we checked in, it took me 2 1/2 hours to get everything loaded into the car and then unloaded. I'm still not a very fast walker. Its only been 2 weeks since I had a baby but... I did it!!! (Jen had to stay in the room and watch Lilly).

Speaking of Jen; words can not express how thankful I am for her. She put her life and desires on hold so she could come here and help me with Lilly. Not many people would do that. She didn't even hesitate. And since we have been here she has been wonderful. So accommodating and helpful. I am truly thankful for such a wonderful sister and all that she has done for me! I love you Jen!!!

So... Noah was put on the transplant list last night. We just have to wait for a heart now. There are two types of transplants that we may have to try if we end up waiting too long. (The Dr's are having a hard time managing him. They can't seem to ween him off the vent... yes he's back on. He was off for about 4 hours is all). One is called a DCD or Death by Cardiac Donation. I don't know too much about it yet but from what I gather it means a donor who they can't determine is brain dead but the family opts to remove life support anyways and then the heart stops beating on its own within 30 minutes. The other is called an ABO Incompatible which means they use a blood type other than his own due to availability and since he is so young his body doesn't reject it since it hasn't made antibodies to the other blood type yet. But, lets just hope he gets a regular heart transplant very very soon.

I will need to stay here in Denver for at least 3 months after his transplant surgery so he can have followup visits etc. We are hoping that they will be able to work with Primary's for his follow up care so we can come home sooner but as of now, thats not the case. So, at least 3 months here and then we'd come back yearly for checkups, etc. Thats a VERY long time away from home. It would be SO much easier if Shane could stay. It's so hard being away from him. But, we'll make it work. Noah deserves every chance he can get and we truly feel that he is getting that here in Denver.

Thank you SO VERY MUCH to everyone who has supported us and prayed for Noah during all of this. Words can not express our gratitude for the love and compassion that everyone has shown us. We are truly blessed!!!

Two final notes for today: I named this post Rocky Mountains?? because Denver doesn't have any mountains. I see some out in the distance on the edge of the city but they don't have anything on the SLC mountains. I have no idea why everyone refers to Denver when they talk about the Rocky Mountains. If you want to see beautiful REAL mountains, come to Salt Lake!!
Second: Muranda, I am SO sorry I didn't wish you a happy birthday when we talked the other day. I didn't even realize what day of the week it was let alone the day of the month. I am so sorry!! But... HAPPY BIRTHDAY!! and even more, thank you for being so concerned about us and for arranging dinner when it was your special day! You are a sweetheart.

1 comment:

  1. I don't want to here you apologize for one thing. I am so glad to see that you are in a place that you can stay for a while. If you need anything, please call me. Seriously, my sister-in-law would love to do anything she can. So, if you and Jen need some time out or anything, Lilly would love my little niece, Emma. They would have so much fun together. We are happy to hear that everything is going as planned, so keep us updated.


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