Originally the plan presented was to cast him and brace him. We did that and it didn't do anything. In fact it made no difference and just made him upset. The people doing the testing weren't surprised because they don't think it is in his hamstrings but in his ankles. Since they didn't think it was his hamstrings a cord release surgery was not an option.
We moved on to Phenol injections which we have been giving. We got them moved up and sooner so that we could look at a baclofen pump and a trial. So we decided to go forward with the trial and we had to wait till after we had Grayson so that we had the time and the ability to do it.
We got the information on the baclofen trial and Dallas and I felt HORRIBLE about it. We don't know what the deal was but Dallas answered the questions for the check in. We still didn't feel ok about it.
So I called. I called to get some more information and to see if they were able to calm any of my concerns. They weren't. In fact, I was even more upset over it. I was also so mad at myself because one of the reasons to not do it is medical cost.
When I had Tyler I really thought that no matter what the cost we would give him the BEST care and that it wouldn't matter what it cost. But it does matter. If something goes wrong we lose our disability for Tyler. Losing our disability takes away his Medicaid. Losing medicaid means we pay out of pocket for the pump refills. The refills we get right now are on the 4 buck list at walmart so getting a refill is "no big deal." But a pump refill. THOUSANDS of dollars every few weeks. Not to mention that we have to pay for the hospital and the sedation that will be used.
When I mentioned cost, they said without medicaid they usually don't even try it because families shouldn't be bankrupt with medical costs. It would cause more burden that it is worth.
I felt horrible and better at the same time. It looks as though we will try a few things first and we will evaluate the situation in November. Maybe in a few months it will look more appealing than right now.