Thursday, April 14, 2022

Good Couple Weeks

 Time has certainly gotten away from us since we returned home.  Gage has improved each day and is back to his normal self.  His white blood cell count went up and his energy and appetite have returned.  Whatever virus he had over spring break really knocked him off his feet for a few weeks.  It has taken 3 weeks to return to his baseline. It is crazy how quickly my mind instantly goes to worst-case scenarios when my kids get sick.  It may be a form of PTSD or, like Jason suspects, a form of protection, to keep you ready for the worst.  

I ran into a family that we knew from the time we were there with Gage's transplant. They had a daughter waiting for a heart transplant as well.  She received her transplant and they returned home to Oregon before Gage received his transplant.  We did not keep in correspondence with them, so it was fun to catch up. They were at Stanford because their daughter had something that I fear the very most, PTLD (Post-transplant lymphoproliferative disease).  This is a form of cancer that transplant patients get.  We have a dear friend Alex who was receiving treatment for his PTLD while there with Gage and it has returned again.  This girl was there for her second round of it as well.  Her mother was very positive and said she was doing great.  When Gage's white count was so low, it had me concerned that that was going to be his next diagnosis. Luckily, it was not, but that sick pit in my stomach did not go away until after his labs confirmed their return to normal. I was so relieved and happy.  It is great to see him back to "normal."

Lindsey has had 3-4 episodes this week, where she feels her heart rate drop.  Sometimes when she is just sitting still and sometimes when she is working out her legs. Usually, the dizziness is only when she is working out. I think her episodes are fewer, so that is a plus.   I am certain we will have to return to Stanford to have her device more interrogated, but we can hold off until after her graduation. She started a new job at Maurices, a clothing store, and has really enjoyed it.  Her energy has been great and she is acting like herself.  Much to be grateful for! Hoping to finish out this school year with no more issues.

We were so busy getting into the swing of things after being gone, that Gage's Heartiversary flew by.  We are celebrating it tonight with a heart-shaped cake.  Five years ago on April 5, after 18 months of waiting, Gage received the perfect heart.  We are so grateful to his donor family who made a selfless act at a very difficult time to give Gage another chance at life!

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