Four months later things sort of hit the fan. I'm serious when I tell you I think friends and strangers sit back and say, "I call bullshit. All this can't happen to one person." I assure you it has and can show you my EOB's from health insurance, photos from hospitalizations and the bills that continue to pile up.
Here's a time line
- Feb 13: I had a biopsy
- Feb 19: Sammy had his first gran mal seizure EVER
- Feb 25: I received my diagnosis of rhabdomyosarcoma and had a CT scan
- Feb 28: I met the oncologist and scheduled surgery
- Mar 3: complete hysterectomy and oophorectomy
- Mar 24: Sammy had his second gran mal seizure
- Mar 31: I had a smart port placed in my chest
All hell broke loose after that. From my first chemo session on April 14th to my last on September 29th, Sammy and I had seven hospitalizations between us (plus one more for me after that last session). The most interesting was on April 18th, yes Good Friday. We were calling EMS for I think the 3rd or 4th time because SAmmy's seizures wouldn't stop. They get Sammy downstairs, I follow telling the responders that I had just been discharged two days prior.
I became very warm and very nauseous in the back of the ambulance and tried to get out. They let me sit down.....next thing I know I am sitting with an EMT right behind me with her knees buried under my arms. I'd passed out. They transported both of us in the same ambulance. I was lucky to not have shown anything other than stress in my testing because Sammy wound up admitted. The ER dr was nice enough to discharge me with the understanding I was heading to the local children's hospital behind the transport team for Sammy. We spent the entire Easter weekend at the hospital. Bonus that weekend was we got our first taste of a service animal.
And that started our service dog journey. Sammy was admitted again in May for four more days, this time to the hospital where his neurologist participates.
In early June, Sammy was transported to a different hospital because he'd had a drop seizure on a pool deck. He'd cracked his head pretty hard. Fortunately, no damage. He was wearing a helmet full-time within 2 days.
At the end of June, Sammy's seizures were cycling. We'd already scheduled him for a VNS (vagus nerve stimulator) placement for July 3rd. June 30th Eric drove us to the hospital and dropped us off for what we though would be a couple days. It was a week. Monday to Wednesday Sammy consistently had seizures. His longest was eight minutes (8) and that was with the nurses giving him Ativan at the four minute mark. Sammy had surgery on Thursday. Normally a VNS placement is outpatient.
Sammy spent another three days in the hospital. The seizures had taken their toll. He was unable to stand or walk alone. When we were able to get him upright in a wheelchair for 90 minutes, he took a three-hour nap afterward. We came home with PT orders.
We use a wheelchair for him when we know we're going to be out for a while. Thankfully we shop at Publix where they have Caroline's Cart.
His medications have changed too many times to count. His first he was allergic to. The next didnt' work. They discovered another allergy in the ER one night. He now takes three daily meds, two vitamins and an allergy pill. He also has two rescue medications.
My poor kiddo has lost mental and physical abilities that may or may not return. We are hopeful. He's also seen a 35 pound gain since the beginning of the year from the medications and lack of activity (due to his balance issues)
Every day is a challenge. Every day we find something new that Sammy has learned or lost. Sybil will help immensely to keep him calm and able to learn new things and relearn the lost.
Every day is a challenge. Every day we find something new that Sammy has learned or lost. Sybil will help immensely to keep him calm and able to learn new things and relearn the lost.
No comments:
Post a Comment