Two Months Post Transplant

Two months ago a family may have sat in despair having just lost their baby. At that time (and maybe not even now) they did not know that because of their decision to donate their dear child's organs, they may have saved up to 8 lives. One of those lives was our amazingly strong son, Nolan. Two months ago he received the greatest gift...the most priceless gift...life. So much has happened in these past two months. It hasn't been easy...but, he is here. And he is what makes my family whole and even stronger today.

I look at Nolan and can't believe what we went through. Every day he grows stronger and is catching up on milestones. I think back to the beginning and it all seems like a dream. Did all of this really happen? My son had a heart transplant. He has another child's heart inside of him. It is all so crazy...I think I am allowing myself to really process it now.

It is mind blowing how far we have come in the past 2 weeks - actually, the past almost 6 months! I am sitting in a chair in our apartment at the Ronald McDonald House and from this chair I can look out the window and see the CICU. I can actually see the room where we spent most of our time. When I used to come back from the hospital at night I used to stare out the window to see if anything was going on in Nolan's room for fear he would have a stroke or heart complications. At that time I couldn't even imagine being in the position we are in now. Just like now, I can't imagine being home. But it's so close.

Nolan had a great day. He woke up BRIGHT and early. By 7:30 am I changed THREE...yes, THREE blow out diapers. The last one involved a bath. We kept ourselves busy working on PT and OT, and while Nolan napped, I worked. So, it was a productive day. Around 3 pm we went to our actual OT and PT appointments. He did awesome in both! He ate some carrots and we also worked on the bottle. Slow improvement, but, nevertheless, improvement. During physical therapy Nolan showed off his sitting skills. I bet within the next week or two he will be totally sitting on his own (he does for about a minute) and in about one month, crawling. These are BETS by me, not told to me by the therapist. He improves daily and impresses us all!

So, we had a nice Monday. Our week is pretty busy, which I am happy about because it will go fast. My goal is just to get to Thursday without Nolan pulling out his feeding tube. That is my worst fear! By the end of the week we will be all set to assume care back in our neck of the woods. We will be back here May 16 for his next biopsy.

Lastly, an update from Ashley, Ollie's mom:

Ollie didn't have anymore seizures overnight and he also didn't have any heart rate dips either. He only had one de-stat episode but came back up quickly. They obviously still have him on a lot of medication but he's still moving all four extremities and he is reactive. They are also giving him some platelets. They said they only had to give bicarb once and now his blood gas looks good. Pretty much, it's as good of a night as we could have hoped and prayed for. Obviously not out of the woods yet but he had a good night.

Thank you for all of the thoughts and prayers for our little family and please continue them.

‪#‎OllieStrong‬

Keep the prayers coming for all these wonderfully strong kids here at CHP. 

#nhos