We are quickly learning that the post-transplant medicine regimen is a balancing act. The balancing act is difficult, as each patient reacts differently to different medicines. What works for one patient, does not necessarily work the same way for another patient. Eli is on 14 medications. 1 patch, 1 oral wash and 12 meds that go into his NG tube. I posted a few days ago my schedule. I don't think many realize how exhausting it actually is. Let me reiterate. Somewhere in all this mix I still find time to love my other child, eat and shower and play on social media. When going back to work in January, this is gonna be horrific on Danny and myself.
I will just start at midnight.
12:00am feed 3oz & pain med
3:00am feed 3oz & pain med
6:00am feed 3oz & pain med
8:00am all meds
9:00am feed 3oz & pain med
12:00pm feed 3oz & pain med
2:00pm 2 meds
3:00pm feed 3oz & pain med
6:00pm feed 3oz & pain med
8:00pm all meds
9:00pm feed 3oz & pain med
And it starts over....
Sometimes this road requires us to do things that we hate doing. None of us likes to put our child through pain and fear and anxiety. But I would do it…again and again…if I had to. I do it because I love him. I do it to keep the sacred gift inside his chest beating as well as it has been since he received it. I do what I have to…just like so many mother’s of children with CHDs. And in doing so, I find a strength within myself. No mom should have to do this…but sometimes, we have to.
Xoxo
No comments:
Post a Comment