Matthew was home for about 12 hours before the vomiting ensued. He has not kept his meds down for three days and is having numerous yucky seizures. He has now had three where he completely quit breathing for 45 seconds to 1 minute. The poor guy is having a rough go.
We took him to our pediatricians office today for a follow-up from the hospital. We discussed everything we have tried, and what we have left to try. Basically there are two surgeries we could do that would keep his medications down, but they wouldn't stop the retching. Both surgeries Steve and I are unwilling to put Matthew through; because they wouldn't solve the problem and his discomfort of retching. They would merely provide us a way "to keep him alive". Our pediatrician agrees whole-heartedly that that is the best decision for Matthew.
We meet with an ENT on Friday to discuss botox for Matthew's salivary glands. It is a fairly simple procedure that would make his salivary glands not produce saliva. We believe that a good portion of Matthew's issue is that he makes A LOT of saliva, and he has a super sensitive gag reflex. He also has difficulties swallowing his secretions, so when they build up, it gags him and then he can't stop. He is on a medication right now to help dry up his secretions, but it's not enough. We are hoping that this procedure will help Matthew. He will most likely have to be sedated as it includes putting a needle in his mouth; but it is our best chance at giving him happy days.
Right now, for the most part, Matthew's days are not comfortable. He throws up and retches alot, is having horrible seizures, and is generally uncomfortable. Our family has two goals or "must have's" for Matthew. Comfort and happiness. Right now we aren't achieving those. In a tearful conversation with our pediatrician, she discussed that if the botox doesn't help; we don't have any other options to make him comfortable and living. None. We will at that time need to make a decision about what is best for Matthew. Being alive and "living" are two different things. Right now Matthew is alive, but not living. He is having more bad days than good. And I don't want to put him through hell just to keep him on this earth. That is not life. And we are not willing to subject him to that just so he can be "alive".
Would you pray with us as we may have to make some incredibly hard decisions over the next few days and weeks? We love Matthew so much; and we want to do what is best for him and what keeps him the most comfortable.