The main problem with becoming a parent is the lack of instruction manual. It’s worse with a child who has special needs – no two children are the same, and even with something more common like autism, one parent’s methods are not going to be the same as another’s. With something much rarer like caudal regression, you can find the medical information you need easily enough – thank you, Internet – but finding other parents who’ve taken care of an afflicted child is not difficult, it’s nigh impossible.
It’s so hard to know what the right decisions are. Did I make the right choice for my child? How many surgeries are worth the possible benefits? How much pain is worth the possible benefits? How will I know? When will I know?
These are all questions running through my mind right now. Having had the night to think over what Namine has had done and what her doctors have said, I am sure of two things: Namine’s stoma closure was the right thing to do, and Namine will need several more hospital visits for her feet.
According to several ENT docs, what can happen with a trach stoma, especially after a long period of time being trached, is that the body grows skin, sort of like scar tissue, down toward the trachea. So what Namine had to have done was have that skin removed, and there’s understandably some pain in her neck. But the thing is, with that skin there, her stoma would never have closed by itself. And this morning some ENT docs took a look at her neck, and they think it looks good.
Her feet are another matter entirely. Like I said yesterday, they were not able to be brought all the way up into the normal position; the arteries are too small and fragile to sufficiently profuse her feet. So every two weeks, Namine will need to be brought in for another re-casting. This means more anesthesia, more being put to sleep, more hospital stays, and more pain.
When Jessica and I agreed to subjecting Namine to the club foot repair, it was under the impression that there would be one surgery. One surgery, and it would be done. The doctor never told us about the possibility that it would require several re-castings – something he mentioned that has been known to happen in other patients as well, something I might have liked to have known before. Of course we knew there would be pain. But now the consideration is not just the pain she is in now; there is also the prospect of pain to come, pain to occur every two weeks.
The pain, of course, is necessary, but for a greater good – to allow the possibility of walking. We didn’t know, we don’t know, if she will be able to, not for sure. But we decided that it was worth the risk, so that Namine would be given every possible chance for the most possible advantages. But having to consider all that pain and suffering she now has yet to go through, I don’t know. I don’t know what the right thing to do is. I don’t know anymore if I still think all that pain is worth it, even for my daughter. I do want her to have every possible advantage. But I would rather kill myself than cause her more pain.