Wednesday, November 05, 2014

Well, that was fun

Not.

We just got home from H.'s pre-op appointment with the plastic surgeon. On Monday she will have her 4th surgery here (7th total) to have more tissue expanders put in. I had put off telling her about until today, figuring ignorance is bliss and why should she need to worry about sooner than she needed to.

As we were riding in the car to the appointment we were talking about why we needed to go the doctor's office. As she thought about having surgery again, it was such a strong emotion that it caused her to have a seizure. (This is not the first time I've seen this connection and it can happen with strong good emotions as well as negative ones.) It was just too much for her. It's a very good thing that TM is my constant travelling companion because it was really, really helpful to have an extra pair of capable hands at that moment. He jumps up from his seat and moves next to H. so he can hold her upright so she doesn't hurt herself. He was great and calm and very kind. I was really very proud of him. Eventually she comes 'round again and we need to have the whole conversation several more times before I'm sure she has actually processed what we've been talking about.

Even in that doctor's office, where she is usually very perky and cheerful, everyone noticed the much more disassociated child. The nurses (whom H. loves) would ask a question and get a rather blank and confused look in return. It makes you feel pretty rotten as a mother to make your child go through something that is so visibly disturbing and worrying to them. Sure, if we had talked about the surgery yesterday, she probably would have been a little more present, but that would have been one more night where she would get to lie in bed and worry about it. Pretty much, there is no good time to tell your child they have to have a surgery they really don't want.

The other reason it was good I had TM with me was that I am evidently suffering from 'surgery brain' and don't really realize that I am. As I'm driving and have made sure that H. understands what is happening, TM asks, "Hey, weren't we supposed to get on the highway there?" Sure enough, I was just driving and not thinking about where I was going and had to turn around. (We probably would have ended up at the stable which would have been even more confusing to H.) We ultimately made it and then sat in the waiting room for a while I explained TM's math to him and H. snuggled up against me.

I know how much I am not looking forward to this and I am not the one who actually goes through it. This is the 8th surgery one of my children has to undergo and I'm always surprised by how much brain space the even takes up, even when you are not actually thinking about it. It turns out, part of your brain is actually thinking about it, you just don't realize it. It makes me forgetful (I forgot to take a child to a birthday party last week) and cranky (I have not been the nicest mom the past couple of days) and doing hard things seems almost beyond my capability (yes, I still need to pay the bills). Getting to the actual surgery date is almost a relief because you have arrived at the date that you just couldn't see past. Afterwards, there are things to do... drains to change, a child to comfort, the promise of healing (well, if you're not injecting saline into your child's head). You can move on.

So here we are playing the waiting game once again. It means you are overly concerned with everyone's health because you don't want the child scheduled to have surgery get sick. Who wants to prolong the agony by having to postpone? It means it is a struggle to do even everyday things. It means hoping you don't forget to do too many important things while you wait. It means it is not good that there is Halloween candy in the house.

Surgery is scheduled for Monday the 10th. The doctor will be inserting two more tissue expanders under H.'s scalp in the same places as before. He wants to finish excising the sebaceous skin that is left on her forehead and scalp. He will also be excising the two long nevi along her cheek that are in parallel lines that run from her eye down towards her chin. She will not be feeling good for quite a few days afterwards. I know the end result will be good and that is why we are doing this. But, really? My main feeling about the whole thing right now is BLEH.

1 comment:

Fam. Huisman said...

ahhh... poor H. and poor you... not something to look forward to... Indeed focus on the result, but still... Thinking of you, all the best! warm regards, Claudia Huisman, The Netherlands

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