Monday, December 9, 2013

Max's Kidneyversary

One year ago today I spent the day pacing the halls at Stanford Hospital in California. My husband and my son were both in surgery for most of the day. I had gotten very little sleep, and had developed a bad sinus infection and was running a fever. And the several hours I waited to see my boys truly felt like weeks. Definitely not one of the more fun days in my life but certainly one of the more important and exciting.

December 11th was the start of a new chapter for our family. Neither of our children have required dialysis since and our two year quest to get both of our babies transplanted had been achieved. We felt great relief and pride and joy that night as Max came back from his surgery peeing and stable. Our happily ever after had been reached. I will always smile thinking about December 11th, at Max’s chance at a whole new life and at his closure on dialysis.

And now here we are one year later and Max is still peeing, his kidney is going well and we celebrate a full year of post transplant life for Max! And a full year free of dialysis for our family!

I never actually posted here for Addie’s first kidneyversary. I had posted for 6 months post transplant and I did not have much more to say on top of that post. You can see that post here... . And I put wonderful happy joyful photos on Facebook. One reason I never wrote a proper blog post was because I felt so overwhelmed with emotion at that milestone. It was like trying to write my wedding vows- how could I ever find the words to write about one of the most significant moments of my life, about giving Addie the gift of my kidney and then seeing a true miraculous healing. And still, when I think about May 8, I get a lump of joy in my throat. I still struggle to find the right words to thank God sufficiently enough, to explain to Addie its significance enough.

For very different reasons, it has been a struggle to write a suitable reflection for Max’s one year kidneyversary as well. This last year for Max has been incredibly difficult. While Addie’s transplant was followed by a year of health and development and amazing stress free joy for her, Max’s has been entirely different. Following a reasonably stable 18 months on dialysis with minimal hospitalizations, Max has had so many infections and ailments and we have sat at his bedside wondering whether we were losing him. He has suffered. Not all the time, by any means. But far more than any precious boy should have to in his life.

And it’s not his kidney’s fault. Granted, the immunosuppression medications to prevent rejection may have made some of his illnesses worst. But mainly, it’s just been a rough year. As he gets bigger and older, some of the symptoms of his cerebral palsy have become more pronounced. And to some degree it has just been bad luck for Max, like getting RSV five days after transplant. We do not for one second regret transplanting Max nor feel it made him overall less healthy or happy. We will always know that it was the right choice for Max. But looking back on this last year, it’s hard to see past the scares and tears. It’s hard to see the miracle for all the difficult memories.

But as I was beginning to write this post, I felt God really reminding me that Max’s story is not about what all he has suffered, but rather what all he has SURVIVED. Max’s transplant story is not less of a miracle because he endured more, it is more of a miracle because he overcame more. For all he has been through, today we have Max here with us. And his kidney is still doing well. It is undeniably a miracle and we are so incredibly thankful.

In the last year since his transplant, Max has 
  • A deadly RSV infection that resulted in 6 days on a ventilator and 4 weeks in the pediatric ICU
  • A staph infection increasing his post transplant admission to 7 weeks
  • A UTI that traveled to his kidney and led to an 8 day hospitalization
  • A stomach bug that led to dehydration that impact his kidney and led to 15 days in the hospital
  • A kidney biopsy that revealed active rejection and required IV steroids
  • Three long weeks with dramatic seizure like spells following going on the steroids
  • A week long hospitalization for his spells (diagnosed as dystonia) causing him to miss his uncle’s wedding
  • A particularly bad g-tube infection that led to a 6 day hospitalization
  • A respiratory infection that led to a 3 day hospitalization
  • And finally, a completely unexpected near death crisis due to carbon dioxide accumulating in his body while at home which led to 3 days on a ventilator and 14 days in the hospital

We could look at this list as a sad list- a representation of all that Max has suffered through.  But we are choosing not to see it that way.  Instead we are seeing at Max's victory list, his badges of honor.  A list of all the miracles God has done in his life.  Through each of these trials, God has been with Max and protected him and preserved both his precious life and his valuable kidney.  And today Max's kidney function is great with no indications of rejection.  We have no idea of what the future holds for Max but we pray that no matter what storms the future holds, that God would continue to protect him and give us wisdom to care for him.  We would love smoother seas and easier years but we don't need that to be thankful and to recognize the miracles.  We just praise God for a miraculous year of survival.  We are simply overwhelmed with gratitude that Max is alive and not needing dialysis and warming our hearts with his famous smiles.

And for that reason, even though it has been a turbulent year and an entirely different experience to Addie's transplant, Today we celebrate.  We recognize that sometimes miracles are dramatic turnarounds. Sometimes miracles restore health completely and take our breath away.  But sometimes miracles are the victory of surviving day to day.  Perhaps less spectacular and exciting to witness but absolutely no less miraculous.  Therefore we will celebrate Max's kidneyversary with equally grateful hearts and will continue to pray for more and more miraculous days ahead for sweet Max!!!

Max's Transplant Journey in Photos: 
December 10th, 2012- Daddy and Max heading to the hospital,, after his last ever dialysis treatment!
December 12, 2012- Daddy gets to see Max for the first time after surgery.  Daddy is doing great, Max is still pretty out of it and recovering. Check our all the pumps, he was on some serious meds!!

December 14, 2012- Max seems to be recovering from surgery.  The breathing tube is out, he is awake and peeing and doing well

December 17, 2012- A unexpected and frightening turn.  Max developed an RSV infection and was unable to breathe sufficiently on his own and had to be placed back on the ventilator.  His kidney began to shut down in response and he was one day away from needing to go back on dialysis when he did start peeing again. 
December 22, 2012- I will always think this is the saddes photo ever.  It was Max and Addie's second birthday and we had order banners and wrapped presents.  Max was on the ventilator and completely sedated and given medication to prevent any movement, basically in a medically induced coma.  His vitals were all over the place and I was so worried.  We tried so hard to still celebrate but it was so sad and trying so hard to be happy was difficult.  This picture reminds me so vividly of the emotions of that day. 

December 25, 2012- Christmas Day in the PICU.  Max had been extubated so was no longer on the ventilator or completely sedated which was great but he still felt terrible and spent the day either asleep or coughing.  Thankful for nurses and doctors who work holidays taking care of our sweet babies. 

December 26, 2012- During his hospital stay, Max was covered in love by his parents, both sets of his grandparents, his Uncle Adam, Aunt Emily and Uncle Lachlan, as well as many of my aunts and uncles.  We know he felt his love encouraging him to keep fighting and stay strong!

December 27-29, 2012- Max is feeling better and gives us his first smile in 16 very long days of missing those precious smiles!

December 30, 2012- it is two steps forward and one step back recovering from RSV.  After a week of breathing without the ventilator, Max tires out and needs more support again.  Avoids the vent again but requires BiPap for 5 days, which is no fun at all for him. 

January 3, 2013- Max is breathing better and is able to come off Bipap and back on just a canula.  He is very excited to lose the big mask!  He is still pretty puffy from his kidney's sluggish recovery.

January 5, 2013- Mommy has to leave Max still in the ICU to go home to Texas.  Very hard day for Mommy. 

January 25, 2013- After nearly 7 weeks in the hospital and another complication (a staph infection), Max is finally released from the hospital to finish recovering in California at the apartment with his Daddy and grandparents and aunt and uncle

February 23, 2013- After 11 weeks apart, Max and Daddy return to Texas!!! Our family is reunited!!!

November 8, 2013- A year filled with many ups and many downs.   One month ago Max was as sick as he was at his worst with RSV.  He was again on a ventilator fighting for his life.  Thankfully he is a fighter!!! Another thing for him to survive and conquer! 
December 7, 2013- For all he has endured this year, Max is still the happiest boy I know! His smiles melt hearts and he is a great joy in our lives.  We feel so blessed to celebrate his victories!