We haven’t heard back yet from Dr. R…. I don’t know if Lizze and I should just make a decision and go?
After all the redness on Gavin’s head went away there are no visible marks. So that’s a good thing. Is that enough of a reason to not take him? He seems perfectly fine now, like nothing ever happened (which is extremely frustrating, because everyone else is still dealing with the stress that caused).
I just wish there was a simple way to know what the right thing to do is. There are so many things to consider. The emotional toll this with take on everyone (honestly that applies no matter what we do). The simple logistics of everything. I can’t be in two places at once. Is anything they are going to do going to even matter? They can’t adjust his meds until after the CSF testing is done and we don’t know when that is going to happen yet. Then there is the financial expense (as bad as that sounds it’s something we have to consider). What happens if there is no room at Akron and he has to go to Cleveland or Pittsburgh?
Should we just take him to Cleveland and have him admitted there? Perhaps they could the the lumbar puncture now and then fix his meds instead of us having to wait indefinably? That actually makes the most sense but it will be the most difficult. If we could accomplish this it would actually get him the help he needs. We could get him back on anti-psychotics and maybe he could stabilize.
I post this stuff for 2 reasons. One I think it’s important that people understand the types of decisions special needs families can face. The second reason is that writing this stuff down helps me to process everything and put things into context. I don’t journal cause I hate to physically write so this is my version of journaling…… It helps me to keep things in perspective…..