Sleeping at the stadium

Just a quick update on Mac. He seems to have a little more energy and is generally feeling better - I see his funny sweet side more often. We are still waiting for that second opinion from Boston. Apparently CHOP never sent the images from his cath and Mri so I had to request them - again.
These pictures are from his sisters track meet - it was very cold and windy which are hard on him and he got completely worn out - he fell asleep standing up lol. We also have to make sure he has sunscreen on and is covered with a hat bc his new meds make him a lot more light sensitive.

More blood work and echo

Mac’s function hasn’t gotten worse - not better either but at least stable for now. He was very concerned about more blood work but his doctor felt with all the labs he had 2 weeks ago we could hold off for a while. Phew! Next appointment in 1 month unless something changes.
Mac had an echo and an ekg and he was very good for both.
None of us slept well - I think we were all anxious about today’s appointments. So we will be packing up and headed home very soon.
Everything from today will get sent to Boston and we will hopefully have a second opinion from them soon

Happy Easter

Happy Easter everyone. We were able to enjoy the morning and a wonderful church service with our church family before hitting the road for more doctor visits. We are supposed to meet with the transplant clinic tomorrow in Birmingham. We are also having everything sent to Boston Children’s for a second opinion. Praying hard that his heart function looks better and his labs look better and we have more time before we have to start talking about listing him and living in the hospital indefinitely