Sunday, January 27, 2013

Happily Ever After

In my book I have been writing in my head, the final chapter, the conclusion, the happily ever after has always been planned to be Max's transplant. Definitely far from the last chapter in the story of Max and Addie's lives but for the specific story of their kidney condition, it seems as neat of a conclusion as you can get. I was all excited about our happily ever after 3 days after surgery when I was talking to the media director from the hospital and daydreaming about what I would wear when I appeared on Ellen. Max was going to be home for their birthday and I had grand plans for this perfect final scene of the twins reunion at the 2nd birthday party. We were looking into having the news come and cover it. Happily ever after seemed just around the corner. And then Max got sick. Not like normal kid sick. Not like oh some throwing up or a sore throat sick. Bad, bad sick. Like would not have survived if a machine had not taken over and breathed for him for a week sick. Like got so upset by the life saving machine that he would clamp on it and nearly not let the machine continue saving his life sick. Like his brand new kidney stopped peeing and his tummy stopped digesting sick. Like had to be on so many sedative and narcotics that he developed dependency and went through the most awful withdrawal I have ever imagined sick. Bad, bad sick. And happily ever after started to seem very very far away. I stopped thinking about Ellen and my book tour and just started praying day and night that Max would survive, that his new kidney would survive and that Al and I would stay strong enough to hang in there while dealing with some really heartbreaking and terrifying stuff. And God heard all our prayers and Max did survive, again and again, he survived scary life threatening situations. And his kidney did great and is working amazingly well again. And even though leaving Max and coming back to Texas to work was the hardest thing I have ever had to do, Al and I both made it through to this day without completely losing our sanity or sense of humor. And Friday night, happily ever after arrived. Max got to go 'home'  (to the apartment in California) from the hospital after 46 nights there. He is going home off dialysis, off oxygen and smiling and happy. I will admit that the true closure and deep happiness of that milestone will be a bit delayed for me because I am not there and I think it won't be until I go to California in a couple of weeks and see for myself how good Max looks that I will really truly embrace the happy ending. But my delayed gratification aside, we are thrilled to have made it to this point and so happy that this story is getting its happily ever after.

Most of you who read this already know the background but we found out just over 2 years ago that Max and Addie would both need kidney transplants. We also found out it would be a while before they could have them. And so this happily ever after of them both being transplanted has been in our plans and on our hearts for two years. And it felt so far away so many days. When Addie first went onto dialysis and went almost immediately into heart failure and stopped breathing, we did not know if she would get to transplant because her heart was suffering so much. And then miraculously she got better, quite quickly and very completely. Then a few months later when she lost her peritoneal dialysis ability and had to go on Hemo, we wondered if her body could handle that and if the months of Hemo would compromise her ability to transplant. But last May, Addie got my kidney and her life turned around in an instant. The sick complicated baby girl who created medical complications that the doctors did not even know existed is a happy healthy 2 year old. Meanwhile as we prepared for Addie's transplant, we faced the very real possibility that Max would never be transplanted due to what seemed to be a progressive neurological condition. We feared he would not survive long enough to transplant or that if he did, his case would just be too complicated. But Addie was an amazing sister and led him to the perfect team who embraced his case with open arms. And suddenly our dream, our goal of them both being transplanted was back to being our reality. God moved mountains for us to arrange a second long California trip in a year and Max got his dad's kidney. And within about 8 days of the transplant, he was so sick he was on a ventilator and the head kidney doctor came to tell me that they were looking at starting Max back on dialysis the next morning because his kidney had stopped working. It was a terrifying night and I worried and cried and doubted Max would make it through this without at least losing the kidney. But the next morning came and he started peeing again. And the next month pretty much went like that- 2 steps forward, one back. He got within an hour of being released a couple of weeks ago and then spiked a high fever and the next day they found a staph infection and he was very sick again and ended up spending another week in the hospital. But through it all, he stayed strong and kept smiling and he is now very well and he did finally get his happily ever after.

We are so thankful to be at this point. For the journey to transplant to be complete. We thank God for protecting Max and Addie's lives time after time. For leading us to doctors who knew how to take care of them. And I am thankful that at every crisis and every turn, God took care of Al and I. I never walked through a terrible day alone. He always provided someone to hold my hand and provide the support and love I needed. Even as we faced long difficult days in California with my Addie and my parents so far away, he provided very special friends for me in California who took amazing care of me. Our parents have given everything to help us and to get Max and Addie transplanted, our extended families have given us money, love, and neverending support. We walk away from this 2 year journey victorious but with a lot of battlescars, all of us. We carry physical scars and we carry emotional scars, but we also walk away stronger and filled with great gratitude to God for the lives of our precious children, for every wet diaper we change and for the people in our lives who have shown us unconditional selfless love and carried us through to this point.  We are so thankful for this happily ever after (but stay tuned as this is far from the end of this blog or the end of the miracles God has in store for Max and Addie!)

Some photos of Max's last day in the hospital...

With Addie and I back in Texas, Max had the Australia crew with him...

One of my favorite Max pictures ever, courtesy and Aunty Em

He certainly does not suffer from lack of love does he?!

Tuesday, January 1, 2013

2012, The Year of the Transplants

There is so much to say and I have like 5 blog drafts started about everything from their birthday to Christmas to explaining more about what is going on with Max.  It has been hard to finish anything because things seem to change a lot with Max so it has been a pretty stressful time. And I KNOW there is no such thing as 'jinxing' but I do feel a bit like every time I post on Facebook and say Max is better, he has a set back so I have been a bit hesitant to write anything on my blog.  But here we are on the first day of 2013 and I thought I should quickly take a moment to be thankful for the miracles we have seen in 2012 and that although we did not end the year quite like we would have imagined or wanted, we did end the year with two beautiful two years who are off dialysis and peeing and we will always look back on 2012, the year of the transplants, as a wonderful year for our family.

At the start of 2012, Addison had just finished a 3 week hospital stay that resulted in her having to come off peritoneal dialysis and go on hemodialysis.  She had lost a lot of weight and was recovering but definitely facing some very real risks and obstacles.  We knew she had hearing loss and needed to work on her eye but in the face of her acute renal issues, all of that seemed some far in the background.  She had turned one and just started army crawling.  If you saw her today, you would never be able to guess any of that.  She is the happiest most adorable two year old who is healthy and thriving.  She is so amazing, she wears her hearing aids all the time and if one buzzes or comes out of place, instead of ripping it off like she did a few months ago, she actually puts her hand up and fixes it herself.  She wears her patch without resistance and her eye is so much better.  She will have a day surgery to fix it more permanently in a couple of months and that issue will be behind her.  She walks everywhere, tries to run and jump and has this adventerous little spirit.  She is starting to discover words.  Medically she ended 2012 with a great biopsy report that her kidney is working brilliantly and all her labs have been excellent for months now.  She is truly healthy.  And happy and so loved. 2012 was a miraculous amazing year for Addie.  I will never stop being grateful for the year I got to give Addie my kidney and see her life turn around before my eyes. 

As I write this post, I am sitting in the PICU next to Max who is today 3 weeks post transplant. I had assumed he would have long been home by now (for reference, Addie was home at 8 days post and out of the PICU at 3 day post... so while we knew he could have a harder time, we were never expecting this).  At the end of 2011, although we knew Max had delays, we had not yet done an MRI and so we really had no idea what was in store for us there.  So 2012 was a very emotional year for us both as we spent the year on the quest to finally settle with a CP diagnosis and then as we explored whether we would transplant Max and then finally did, only to have the unexpected hurdle of an RSV infection.  But while 2012 was difficult for Max, I do not want to ignore the many miracles that happened for him this year as well.  In February of this year, Al and I sat through an awful meeting with a team of doctors and were told that they suspected Max has a neurologically progressive condition that would result in him losing all his abilities and significantly shorten his time with us.  We were told the chances of transplanting him ever were very small.  And yet, here we are on the first day of 2013 and Max is alive, he is very much aware and interactive.  We know he has cerebral palsy and will need a wheelchair but we also know there is no limit on what he will be able to think and how he will be able to interact with others.  And most significantly, he has his Daddy's kidney inside of him and he is peeing and free of dialysis.  He is still fighting RSV and not well yet but I do believe the worst is past us and that from a very scary and terrifying couple of weeks, he survived, his brand new kidney survived and is working well and he is slowly, but I do believe surely, going to get well and come home better than ever.  So 2012 has not been an easy year for Max, or for us as his parents, but it has been a year of great miracles nonetheless. 

Please keep praying for all of us.  At some point, I will write more about what all has happened these past three weeks. I haven't been ready to really talk or write about it yet but I will.  It has been very up and down and Max is still on a biPAP machine to help him breathe so he really needs prayers for complete healing.  Al is doing really well.  You would never think he had surgery 3 weeks ago, he is just doing awesome.   Addie is still here with us and bringing so much joy to us all.  She is spending the mornings with Al and Al's parents and loving her time with her grandparents and then I leave the hospital in the afternoons to spend time with her and she makes me so happy.  I could really use some extra prayers this weekend as I have to go back to Houston with Addie on Saturday.  I have to be back at work on Monday.  I never imagined leaving my baby in a PICU in another state.  But for a lot of reasons, there doesn't seem to be another option so please pray for peace for me, and stability for Max and that my time away from Max will seem short and and not as painful as I fear.  I will be coming back for a weekend to see the boys in a few weeks and we hope they will be home in late February.  Al's family will be with him the whole time. 

Thank you all for the way your love, support, prayers, generosity and interest sustained us through 2012, especially admist our two big transplants.  We feel very blessed that we did not walk alone through the highs or the lows of last year and look forward to what we hope to be a less dramatic and eventful and more healthy, happy and stable 2013.

Some photos from the last month...

Adorable Birthday girl!

With my baby girl on her birthday

Opening and Playing with presents!

Her Abby Cadabby balloon was bigger than her!

Cuddles with mommy

Max's first post ventilator smile, appropriately given to his Daddy!

Thankfully he saved one for Mommy too!

Last week during one of his really good days, love his precious happy face!

Today (01/01/13) post set back on his biPAP, rosy from another blood transfusion

Brushing her hair!

With Adam and Jenny, loved spending time with family this Christmas

Slides are so much fun!