Tuesday, January 5, 2016

Welcome to 2016 - An Over Due Update

Recently I've found out there are still some of you out there who have read this blog and followed Noah's story and would like an update. This blog was originally started to help keep family updated on Noah's story and also to help me process the new life we fell into. It has definitely served it's purpose and hopefully helped a few along the way. Now that the new life has become our new normal, I don't feel the need to share or rehash every little thing that happens. It's just life and you learn to deal with it.

That said, Noah is doing well, all things considered. His Annual Heart Cath and biopsy over the summer of 2015 shows that he has moderate vascular rejection (aka antibody rejection) and mild cellular rejection. It was decided to do monthly treatments of IVIG for 6 months to help treat the antibody rejection. During one of these infusions, we noticed that his O2 levels drop periodically for no reason. Since then, we've found out that it happens a lot but then comes back up. He had a breathing test done and had a bad reaction to the albuterol (which has never happened). We spent several days in-patient right before Thanksgiving trying to figure it out. No one could tell us what is wrong. His lungs sound awful but the XRay and CT scan look clean. I finally had to demand they send us home for Thanksgiving when they couldn't decide if it was Restricted Lung Disease or a really nasty pneumonia that immune suppressed kids tend to get. Since he didn't look or act sick, they finally agreed we could go home.

Another trip to the hospital before Christmas to see Pulmonology landed him right in the OR 2 days after the Holiday where they put a camera into his Lungs to take pictures and samples of mucus. STILL no answers. It came back clean from Viruses and Bacteria. I honestly don't know what's left. They sent some samples back east to see if it's coming from his stomach or lymph system. I am worried it might be Plastic Bronchitis even though that is seen more in repairs than transplant. 

His next appointment is later this week. He'll have an echo to check his Heart function and all the other tests to make sure he's doing good. We'll take some labs to see if the IVIG is helping the Donor Specific antibodies and vascular rejection. He'll then spend the weekend in-patient for his next IVIG since the RTU did not feel comfortable doing it as out-patient. Hopefully I'll remember to update when I have more news to share.

One other thing that happened was we received our first letter from his Donor Family. Eight and half years after transplant, it was the last thing I ever expected. I had written to them about a year after and never received a reply. For a long time that made me sad. I wanted to know them and thank them personally. I had finally come to terms with it and here comes the letter. I now know who his donor was and know his donor family. They don't know us or know that I know but I was able to figure it out. Maybe we'll end up having a relationship, I don't know. But for now, I am keeping the information private. Just know that they miss their loved one but find great comfort in knowing that their passing gave life to others.

Organ Donation continues to be the greatest blessing to our family. When Noah was born I never dreamed that I would get to see him turn Eight and be baptized or become the star of his 3rd grade class. Without their selfless gift I would never have known his love for batman, video games, and slap-stick humor. I would never have heard him say "I love you, mom". I love my boy beyond words. I get to kiss him goodnight every night because someone said yes.

Are YOU an Organ Donor?

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