Usually I know how to best meet Sarah's needs. It's instinctual. I usually go with my gut. But now I have a dilemma. Every day I chew it around in my head. What to do. What to do.....
Sarah is scheduled for more Botox and Phenol injections in a month at Children's Hospital Boston. She has had them many times over the years and they are very helpful at relaxing her tight hamstrings. We are trying to hold off on hamstring surgery-something I do not want to have to put her through. She cannot tolerate narcotics for pain control. She has had them surgically lengthened once before when her hip surgery was done. As she has grown, they have tightened again.
What's the big deal with the hamstrings? Because they are tight, they pull on her pelvis and slide her right out of chairs. Because they pull on her pelvis, her pelvis pulls on her spine making it even more rounded (kyphosis). Right now her kyphosis is mostly flexible, meaning it can straighten out. But it could become rigid. Then we are in trouble. That compromises her cardiac and respiratory status. So that's the problem with tight hamstrings. One thing leads to another.....it is uncomfortable for her. Her quality of life is much better when the hamstrings are looser. She feels better.
So back to the Botox/Phenol issue. It only works for about 6 months or so. It needs to be repeated. There is general anesthesia involved. But that is nothing compared to the lengthy anesthesia that would be involved with actual surgery. The problem right now is with the Botox itself. There has been incidences of it causing deaths in children because sometimes it has systemic(overall body) effects. It is a poison, but works well when it stays where it is supposed to-in the muscle. But sometimes it leaks out and travels around the body causing problems-from minor issues to life threatening pnuemonia.
One time many years ago Sarah did have a systemic affect of having trouble swallowing after her injections. It was not so bad that she needed a GTube or anything but every time she swallowed-I would hear a gulp. She never choked or anything like that. Just an odd gulp. It wore off as the botox wore off. It has not happened again. But now, I see that some Docs are going on 'Botox holidays' where they are not giving the botox to the kids right now. Further decisions will be made in the future. Sarah's Doc is not doing this. She is still giving the botox. She feels it will be safe for Sarah as she does not give a full dose for Sarah's weight. I asked her if we could do the Phenol without the botox but she said that couldn't be done.
I don't know what to do. Inject poison into my child to relieve her strain on her hips, legs and spine? Take a chance yet again? Every time I take her she feels so much better for months afterward. But it's a risk. And it is coming around again, the decision. But this time I feel more concerned as I hear that injections are being cancelled around the country. But not here at Children's. At least not yet.
What's the alternative? No injections, the hamstrings continue to tighten, she is more uncomfortable, the back curves and I am looking at surgery for her-either hamstring or spine. Surgery on a child whose pain control is very difficult after surgery, if not impossible. She's either allergic or nontolerant to the narcotics. After her hip surgery, she went home on tylenol. It was horrendous. This is unacceptable to me. I cannot put her through that again. It is inhumane.
This will be my decision. And I am stuck. I wring my hands. I look a little like Sarah this afternoon :)
We are both wringing our hands. I think we will take a walk. That might help.
