With Gavin going downhill again we have to begin planning for a hospital stay. I can see this trip happening in the next 30 days (unless the new meds help). We have to make arrangements for the kids and have them in place in the event this happens. The past few times he was in the hospital it happened without much warning. That is to say we hadn’t really planned for it and it had a huge impact on us emotionally, physically and finacially.
I’m not sure if it would be Akron or Cleveland because ALL his neuro specialists are in the Cleveland Clinic. It would probably depend on who had room and/or if the movements come back due to the new medications. That’s another concern I forgot to mention. We have doubled his anti-psychotics so the movement disorder will likely get worse in the next few days.
Aside from making arrangement for the kids there are few other things we have to do to be ready. I need to make sure we get the van fixed once and for all. Hopefully we are still dealing with the same issue so it may not be out an pocket expense to repair. If it’s something else, I’ll have to come up with the funds to cover the repairs. Speaking of funds, we have to start trying to put money aside to cover the expenses of driving back and forth (especially if it’s Cleveland) with gas approaching the $4.00/gallon mark. The last few times really caught us off guard. The driving alone was huge hit to our fragile situation. We also have too eat at times. Hopefully, knowing that this may be coming will allow me to be in a better prepared this time and minimize the impact it has on us.
Gavin started the new meds last night and we are scheduled from another incremental increase in 2 weeks. I hate risking the movements getting worse but it’s the lesser of 2 evils. Preserving what’s left of his sanity and peace of mind is important as well. Plus the deeper he goes into the psychosis the more dangerous he will become to himself and those around him. The stress is already starting to build because I can just feel it approaching.
Maybe will be able to avoid this but if not at least I’ll try to be ready this time…..
Have you talked to his school about the financial burden hospitalization places on your family? My class helps out when our friends are in the hospital. We make snack baskets to help with the cost of food and try to get a gas card for the family. It is not always a huge sum,but it it something.