This coming week is a really big week for the Lost and Tired family. We have a ton of traveling to do and things are going to be very stressful.
Monday, Gavin receives his antibody infusion again. This time will be a bit different and the outcome unknown because he will be getting an increased dose. This is because his levels have been to low and need to be brought up.
The unknown part is how he’s going to tolerate the increased. Basically, it could make him sick or give him a headache.
Hopefully, everything will be fine.
Tuesday, we accidentally triple booked. Gavin is supposed to be at the autonomic clinic at the Cleveland Clinic, Lizze is supposed to be getting an MRI and Elliott and Gavin are supposed to be in therapy. All these appointments are at the same time and obviously that’s not going to work.
Gavin’s autonomic testing will have to take priority and unfortunately, Lizze’s MRI will have to wait, even though she desperately needs it.
Wednesday, the boys have therapy in the afternoon and Friday Gavin will be admitted to Akron Children’s for at least 3 days for an EEG, swallow study and work up for his tremors.
I don’t know how we are going to pull this all off yet. We will need a sitter for Tuesday at the very least. The travel itself is always a consideration as well. We have to think about fuel, parking and food, especially for Lizze on Fri, Sat and Sun.
The other, larger concern and reason for me stressing out is that Gavin has to be off his blood pressure medication beginning Sunday and carrying through his testing of. Tuesday. I have no idea how this is going to go. The only thing keeping his blood pressure from crashing is the medication. Having said that, the testing won’t be accurate if he’s taking medications to address the problem.
This is a necessary evil, but an evil we will have to be very careful with.
The only part about this week I’m looking forward to, is it being over. We stand to get some much needed and very valuable information about Gavin’s health this week.
I hope that’s all we get. If our track record holds true, we’ll end up with more new questions than answers. If that happens again, I swear my head will just explode.
Keeping fingers crossed! and prayers going out!!! Hang in there Rob! Hugs to you, Lizzie and your boys!!! Good luck!!!