Most of you who are friends with me on Facebook already know the exciting news that not only did we get a great report on Addie's kidneys but we both got approval to transplant Max and made our final decision that we will be moving forward with our plan to transplant Max on December 11 which is less than 4 weeks away! It was a busy, stressful and emotional week but we left with a great outcome and most important, we left with confidence and peace that we making the right decision for Max.
Our primary concern, and our team's primary concern, was would transplant increase the quality of Max's life. There was never any question on Al's side that he wanted to give Max his kidney, there was no hesitation that if we knew we could safely transplant Max and knew that he would not be making him worse that would be what we would decide. That was an easier question to answer for Addie for several reasons. The biggest difference for us is that Addie was not stable and Max is. Addie needed to be transplanted. The risks for a baby on hemodialysis were unbelievable and she not growing and running in to significant life threatening issues with potassium levels and hypertension. Leaving her on dialysis was so obviously not in her favor that it made the decision easy. Max, on the other hand, has had a great course with dialysis. We has had no hospitalizations since April and none of the significant issues that Addie has had. He is growing and he is getting to stay home thanks to peritoneal dialysis. Right now dialysis is working for him. The neurologist said 'I see a child who has a lot of medical issues and yet he is growing and healthy and smiling... why risk all that and go into such a big surgery?' It was a good question.
He had a really good meeting yesterday with the transplant team, addressing these questions. We had long discussions regarding how might things be different this time. I think it was important for everyone that we understood that Addie's rock star transplant experience may not be the same for Max. There are a lot of risks for any baby undergoing a transplant and Addie's experience was abnormally smooth and uneventful. We expect a rougher course for Max... but then again, who knows- maybe he will sail through just like his sister. We are certainly praying that is the case. But while there are always respiratory risks and possible complications, there are not significantly more for Max and so from that standpoint, while yes there are risks, they are not reason enough to not transplant him. His cerebral palsy may make immunosuppression more difficult in the future but it also may not so we don't feel that we can make decisions now based on things that could happen down the road. So while there are risks, we do feel that we can safely transplant Max.
And while it can seem difficult to put a currently stable and quite happy baby through a difficult surgery and months of recovery, the team also helped us see that it is always preferable to transplant a healthier baby who is stable than a baby who has run into a lot of complications and is very compromised. They also explained, which we already know well, that dialysis does have a lot of risks and that the chances of Max remaining stable on it long term is low. He will eventually run into problems and the dialysis will over time take its toll on Max. And the best thing we can do for him is transplant him now, before those things happen. And that made total sense to us and helped us feel at peace with going through surgery now and not later. We also believe he will in the long run be so much happier to spend less time attached to his machine and with the family and going out. He was so incredibly happy in California and loved being busy and out and about. Even with his motor limitations, a dialysis free life will buy Max so much more freedom and quality time with his loved ones. The quality of life issue is murkier than with Addie but it is nonetheless clear to us he does have a lot to gain from being transplanted.
So... we left feeling very supported by the team and very sure that, although it will be scary and difficult, transplanting Max now is the best decision for our family and for his health and happiness. With that peace and direction, we are excited to let you know that on December 11th Al will be donating his kidney to Max in California! My in laws and I will be there to help them through their first couple weeks and then we are planning a whole family birthday celebration and Christmas at the end of December in California and are thrilled to realize that we will celebrate their second birthday with them both having kidneys and being dialysis free. What a blessing!
Here are some sweet pictures of my boys. They have a wonderful relationship and Al is so happy that he is able to give this gift to Max.
There are a few ways we would love your support and encouragement in the next three weeks.
1) First of all, and most importantly Max needs your prayers! We saw wonderful miracles through Addie's transplant and we know that the thousands of prayers lifted up for her made a huge difference! With his additional risks, he needs your prayers even more than his sister and we would ask everyone to surround him with prayer, love, positive thoughts and well wishes leading up to December 11th. I will share more specific prayer requests as we get closer! Please feel free to share Max's story, share links to this blog and share our names with your family and friends so we can have lots of prayers and love during this time!
2) Secondly we would LOVE messages for Max. I started a poster drive for Addie and she ended up with 300 pictures that we displayed in her hospital room. It was a great testimony of how loved she is and how much prayer and support was with her. It encouraged us all tremendously! We would love the same for Max! So please start snapping away- with the holidays this week, what a great opportunity to take some pictures with messages for Max. You can send them to me at firstname.lastname@example.org, text them to me or post them on Facebook and tag me! And again, please share this and get your friends involved too.
3) Thirdly, if you are able and feel led, we have actually started a transplant fund for Max that you could make a donation to. There have obviously been exorbanant costs involved in arranging two out of state transplants and what will end up being more than 4 months of living in a serviced apartment. Thankfully our insurance has helped with a lot of costs and our families have been amazingly generous. We would not have been able to transplant the babies were it not for the generosity of both of our parents. However, we have some additional costs this time as I am having to take a chunk of unpaid leave to go out for the surgery and we could certainly use some help covering this cost. I had great visions of organizing a fundraising event and inviting you all to some gala with a silent auction... but alas with only three weeks remaining and a lot to do, I don't see that happening. So I have set up a donate button at the top of my blog. You can use any credit card and donate to Max's transplant fund. Many people have asked how they could help so we felt led to start this fund. It is a private way to donate and just a way that those of you who are interested in a way of helping us financially to do so.
We appreciate the prayers for us during the past week. We really left with a great peace about our decision and know that all the prayers for wisdom and direction were answered. We are so thankful for all of you and the support we have experienced in the past couple of years.