Tuesday, October 2, 2012

Our Amazing God...

Here is the latest update from Addison's mom Angie.  What an amazing God we have.  This story will give you goose bumps....

2 days post Transplant

Posted 2 hours ago
Where do I even start? I can't even begin to tell everyone how truly thankful we are for all the prayers and continued prayers for the months to come. We truly believe Addison is here because of Gods amazing grace and I can't begin to tell you how thankful we are for all the support and prayers, thank you!
I think best is to start with a timeline of events we have encountered over the last month-
September 9th- We were at Rifle Falls enjoying the outdoors Addison seemed more tired than usual
September 10th-I called her cardiologist in GJ as she wasn't eating well and vomiting some. Her card saw her, listened to her and put her on oxygen as we thought she had a virus.
September 11th-I called her cardiologist again as I started to question not being a virus, he did an echo and saw Addison was in heart failure.
By 9PM Addison and I were in Denver and she was in full blown arterial flutters and by midnight she had the MI heart attack in my arms in the CICU. Specialists prepared us as we didn't know if she would make it through the weekend. Lactate was a 9!!!!
The next 3 days Addison clung to life, but stayed with us (MIRACLE)
September 14th- By the grace of God Addison had a speedy listing (normally it takes 7 days to go through the approvals and process) and was listed as a 1A on UNOS for heart transplant. (MIRACLE)
Over the next few weeks she balanced medication after medication, battled severe fluid edema, pain and fought hard core to keep her barely pumping right ventricle working. (MIRACLE)
During this time Addison had good hours and bad days but kept telling us she did not want a new heart. This was heart breaking. She remembered Fontan clearly (especially, chest tubes) and she knew what was coming.
Friday September 29th Savannah went to her teacher and said "Are you sure you will tell me when my sister gets a heart, so I can go to her? Are you sure the office will come get me, I must be there"
Savannah came up the evening of the 29th.
The morning of September 30th Addison was taken off Lovenox (blood thinner) and it was a big debate of wether Addi should be put on aspirin or started on coumadin due to her severe RV function to prevent clots and prevent stroke but not knowing when a heart would come was a fear as to it was great concern of Addison having so much scar tissue her surgeon wouldn't be able to control the bleeding even more so with being on a ton of blood thinners. Debated all day it was decided to hold off and discuss with transplant team in the morning. (MIRACLE)
The same day, September 30th it was decided we would do overnight feeds via g-tube so we could let Addison get hungry during the day and eat by mouth if so she wanted, meaning Addison was NPO the whole day of the 30th without knowledge the gift was coming. (MIRACLE)
The afternoon of September 30th we were all hanging out in the CICU, Addison looked over at Savannah and said "Im going to get my new heart today" Savannah looked at her and said "No, we don't know when your heart is coming, silly."
2 hours later-We were taken out of the room and told we had a donor heart. (BIG MIRACLE)
Addison was then taken into the OR-Again we were told scar tissue will be bad, bleeding will be bad, being a failed Fontan, we don't know the outcome....
Addison left us at 1:12AM and sat with Jesus as her heart was stopped and forever taken out of her body. (We donated her HLHS heart to science for future hope of HLHS kids to thrive)
Addison's heart was taken out of her body and the new heart put in. Normally, a donor heart will need to be shocked to "start up" The new heart started on its own, not even needing shocked ONCE! (MIRACLE)
By 10AM Addison was out of the OR and she had NO bleeding issues. She needed blood but it was controlled and stable. Her scar tissue was bad but nothing like they had planned on. (MIRACLE)
She came out of the OR hooked to a pacemaker (Like all transplants) but she did not even need to be paced! (MIRACLE)
Addison was then extuabted by 2PM not even 6 hours out of the OR (MIRACLE)
If you don't have chills by now, head to church and grab some faith!!! We have had specialist after specialist, come in and tell us they can't explain it. Ill leave the explaining up to Addison!
Addison has continued to do well. She had 2 of her 3 chest tubes pulled, her IJ line and aterial line pulled today. She even walked and is eating with her MOUTH! NO GAGGING, not one time!! (For those of you who know Addi personally, this child gags on everything....well, she used too!! :)
As of now, Addison is doing really well but she has a very long road and Im trying very hard to not be a debbie downer, but she does. We literally traded one disease for another. The facts are, her PRA's were high going in, 64%. Meaning it is very likely she will within the year face rejection. But we will deal with it. Tweak medications, admit to CICU in Denver for IV Anti-rejection medications and wait. If she continues fighting rejection she will possibly need re-trasnplanted. A transplanted heart doesn't last forever. We were told the goal and hope for this heart is 10 years before needing another transplant. That means age 13. Tough to swallow. As of now, Addison was started on her ATG which wipes her immune system down and AVIG which replaces her antibodies. So this mama, is very scared of germs! (If you thought I couldn't get any worse, you were very wrong) :)
As of now it is rumored Addison will go to the step-down unit tomorrow! And discharge to RMH within 6 or so more days, (God willing)
After that, we must stay in the Denver area to go to clinic every 2 days for atleast 3 months. As long as Addison does well, we may be allowed to go back to GJ for weekly appts. with her cardiologist every week for Ekgs, echos and blood draws. Then appts. in clinic with transplant team every month in Denver for at least another 2 months. Then a heart catherization to biopsy in March. All checking for rejection. As far as medications go, we will have more than ever but we will deal and so far Addison is already taking 2 of her anti-rejection meds by mouth!! No complaint!
ONE DAY AT A TIME! :) Not looking passed March and just hoping and praying to get Savannah through the school year and Addi through this change to plan accordingly to our new future as a transplant family!
Thank you all for the continued prayers and we will update as we receive more knowledge on how to care for this miracle transplant survivor and learning our once again, NEW NORMAL! :)
Thank you again for all the prayers, we are so thankful!

Thank you to everyone who has been praying for Addison and her family and everyone that prays for Raygen.  God is listening.  I hope and pray never to be put in the position that Addison and her family have just went through, but only God knows where Raygen's journey will lead.  God is good, all the time.