Eli had the second surgery yesterday. The doctors were pleased with how it all went and feel they were able to burn the rest of the hamartoma (tumor) without added complications. They are cautiously optimistic.
Eli is handling the second go around well. He is more lethargic than I remember him being last time. His breathing is SO heavy and the eating again is non-stop. We are hoping to get him up and around soon. He still does not understand why he has to see all the doctors and stay in the hospital. It is just how it is. There is no need to go into detail at his age and we only prepare him for exactly what he experiences, like the mask that makes him go to sleep. He has expressed being more “scared” lately about stuff in general but that is developmentally appropriate for his age and he only mentions being scared about once a week.
This second surgery was more difficult for me. Maybe I was just naive last time. I just assumed that the surgery would go well and we’d get back to our normal lives. It would be over. Done. But it didn’t end. Eli’s negative behaviors have been escalating at home and although it is frustrating, it’s more sad to me. Also, seeing Eli’s cognitive abilities decline is a constant concern. The financial toll is being felt, although not devastating us due to our frugality and some generous friends, family, and even strangers donating (Thank You All!) but it does make regular financial decisions more difficult and puts many things on hold. Taking so much time off of work is hard and disruptive to everyone.
Maybe the toll of all the stress over the months is getting harder to carry now. I have been teary eyed or cried often for little things this time as opposed to maybe one cry last time. I am less optimistic and worry about Eli’s future. Our future. The main concern is Eli’s health. But everything that goes along with this is so wearing.