The baclofen trial is "not a big deal" and has been presented as such. I agreed but at the same time a trial is to see if we are a candiate for a pump. Pump I am not so ok with. Dr. Walker is on the spastic team at PCMC so I asked.
He doesn't like the idea. Like he thinks it is a REALLY bad idea. He doesn't like putting a shunt at risk for the baclofen unless it is SUPER needed. He said he felt that there were other ways to get relief from the muscles but some of them might leave a child a little more incapacitated. He might not be able to function as well and it might make all of us a little more frustrated. He said he felt that adding something else that we have to keep working in his body is asking for issues. He said if the pump fails a shunt will fail and you have a double whammy. It isn't very reassuring.
He was a little upset that Tyler had a seizure and warned us of a possible shunt malfunction in the next few weeks. Sometimes the shunt can start to not work or change the ventricles, but not cause a total malfunction for several weeks. So if vomiting happens in the next few weeks we are to go in to PCMC for a scan ASAP.
He said that he felt so bad for parents in our situation. Daily we make life and death choices for our children. We watch them get sick, we watch them struggle daily.
Dr. Walker is also the person who put in papers for Tyler's make a wish. Before we left Tyler said he had something he wanted to ask Dr. Walker. Dr. Walker got down on Tyler's level and Ty said," Do you want to go to the beach with us Dr. Walker?" Dr. W asked which beach and Tyler told him to Mexico. Dr. Walker said he would love to! That the air here was yucky. Then turned to me and told me to enjoy the nice weather, let them take care of Tyler and that we should enjoy ourselves.
I think we will. Soon we will know when we get to go to Mexico!
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