I have three long posts I have been meaning to write- all about Addie coming home, a one year birthday post and a where we are with transplant post. Unfortunately life has been crazy busy with Hemo, getting Addie home, donor testing, their first birthday and now Christmas approaching... so my lengthy posts will just have to merge into one short post. But I did want to just quickly let everyone know that Addie is home and doing well. We were finally able to pull her second chest tube on Monday and they released her to come home Tuesday afternoon. It was a wonderful feeling to bring her back home. We were a little nervous the first few nights (and by a little nervous I mean I think all her nurses and doctor will be changing their numbers soon since I sent way too many 'is this ok?' texts!) But she has seemed really well today so we are relaxing and loving every minute of being together.
She will, for the time being, go into the hospital 5 days a week for her hemodialysis which goes for about 3 hours including set up and so forth. I don't mind the trips in right now because it means the doctors are seeing her a lot and making sure she is ok. She managed her first 6 hemo treatments without recieving a blood transfusion but she was way too anemic and unhappy so on Wednesday her doctor said he gave her a birthday and Christmas present- lots of blood! We did careful matching and washing of the blood and special medicines to prevent her from forming antibodies to it so the transplant surgeon thinks it was a good thing for her and shouldn't have any real consequence. Do continue to pray for her, though, that these transfusions will be few and far between! In the meantime, she is super pink and it's pretty adorable!
In other exciting news, I have had more tests done than Addie this week I think! Based on Al having some issues with arthritis that need a bit more time to address pre transplant, we decided to go ahead with me getting all the extensive testing. And was it ever extensive! I had so much blood drawn and I had X rays, CT scan, a 24 hour blood pressure monitoring, glucose testing, some weird nuclear study to check kidney function and I kid you not like 10 hour long interviews. Honestly I would gladly be stuck for blood or left in a scanner for an hour before I could endure another 'are you really sure you are ready to donate' interview. I know they want to be thorough but I know with 100% confidence in all my heart that this is what I want to do so I tired of the interviews. BUT, I found out today that all my testing is back and I have officially been approved by the medical board to be Addie's kidney donor!!!
This is a cause for great celebration for our family and I am filled with joy that I will be able to help Addie in this way. We are also overjoyed to know that Al is a match for Max so over the next few months, we'll be letting Addie recover, letting Max get stronger in some other areas, let Al get his arthritis pain manageable and then Al will donate his kidney to Max. We did not know before this week if Al was even a blood type match so we feel so relieved that things have worked out just as we hoped they would.
We don't know when the transplant will be. We are in the perfect situation of having a donor completely ready and approved so that whenever they decide is the perfect day for Addie I am ready to go! We anticipate it will be in the next month. Addie has lost a significant amount of weight and has been stuck in the hospital in a crib for three weeks so Dr S, her awesome doctor, is weighing up the benefit of giving her more time home, recovering and growing versus the cost then of more hemodialysis. Dr S in currently in New York and although she's communicating with me via text, she wants to get back next Wednesday and see Addie for herself and really carefully consider when she should transplant. So we will keep you posted. You can start praying in advance for our family because it will be a really huge deal having Addie and I in surgery together at the same time and then recovering together. We are excited to move forward to a better future for Addie though so we look to transplant with more excitement than nervousness, although both are definitely present.
And also Max and Addie are one!!! It's a huge milestone for any family to have their baby one! It is particularly special for us as several times over the past year we have been told some troubling statistics about their chances of making it to one year old. And here we are. Proving that God is bigger than a big bad kidney disease. With His help, the wisdom of our doctors and our family's determination to fight like crazy for them, we know Max and Addie will have many many more happy birthdays to come!