We are loving being home and being able to do all the normal, happy, family things we missed. Mac lost his 2nd tooth this morning after church. He went to his sister’s birthday party at a trampoline park. I was so worried he wouldn’t be able to participate and would get upset but he jumped a little, rested a lot lol. He’s pretty good at listening to his body and stopping when his heart has had enough. I feel he is calming down emotionally. He still freaks out often but not as much and he calms down faster.. He’s sleeping a little better, eating a little better. His blood work came back and looks a little improved. Everything is baby steps with this new pacemaker - it will take time to see improvement which can be frustrating if we were expecting big changes right away like after his other surgeries.
We are blessed in so many ways - every day with Macsen is a blessing. I don’t think any of his Boston doctors felt confident Macsen would survive this last surgery. They went back and forth on whether it was the right thing to put him through. There was such a solemness before they took him back - not the confidence we were used to seeing with his other scheduled surgeries. They visibly looked surprised, relieved and amazed he did as well as he did. That’s such a hard thing to recognize in your child’s doctors faces - disbelief that they have survived. We continue to pray his heart failure improves and that we won’t have put him on the transplant list.
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