|© Anar Mammadov | Dreamstime.com|
The injections would be performed in an operating room under general anesthesia. The reason, his orthopedic surgeon later explained, was to make the experience as positive as possible for kiddo since—if the Botox helps kiddo—he could potentially receive injections every 6 months for years to come.
After speaking with both the rehab doctor and the orthopedic surgeon, and after looking up research studies on Botox as a treatment for cerebral palsy in children, I felt confident that Botox injections were worth pursuing.
3 Days Before the Procedure
A nurse called and asked me a bunch of questions about kiddo—about prior surgeries, whether he's had problems with anesthesia before, medications he's on, etc.—and gave me detailed instructions, including:
- No solid food after 11:30 p.m. the night before the procedure
- Liquid medications, water, and/or 100% clear apple juice may be given only up until 2 hours before the procedure
- Arrive at the hospital 1.5 hours before the procedure to talk with the rehab doctor who will perform the procedure, sign consent forms, etc.
Day Before the Procedure
11:00 a.m. – All packed to spend the night in Boston. Feeling nervous. Kiddo has been under general anesthesia before but not since he was 9 months old. He's 5 now. How will he react? And what will he remember of this time?
12:30 p.m. – Picked kiddo up from school and drove to Boston. Determined to try to have a fun afternoon with kiddo, to help create positive memories for him.
1:45 p.m. – Checked into a B&B and then took a subway train further into the city. Kiddo is *obsessed* with Trolley from the show Daniel Tiger's Neighborhood and likes riding on public transportation, so our plan was to ride a trolley around town.
2:45 p.m. – Received a phone call confirming that the Botox procedure would be at 7:30 a.m. the next morning and that we should arrive at the hospital by 6:00 a.m. Waited for a trolley. Meanwhile, kiddo found a cool horse statue.
3:15 p.m. – Rode an Old Town Trolley around town.
5:30 p.m. – Ate dinner at McDonald's.
6:00 p.m. – Got onto a subway train to head back to the B&B. The train soon became packed with Red Sox fans headed to a game. It then got stuck behind a broken-down train for about 45 minutes. Kiddo didn't mind, though, because—we were on a train!
7:30 p.m. – Gave kiddo a snack and meds, brushed his teeth, changed him into jammies, and read him part of a Daniel Tiger story.
8:00 p.m. – Kiddo fell asleep. Packed as much as possible and set out clothes for the next day.
9:30 p.m. – Went to bed next to kiddo.
Day of the Procedure
5:00 a.m. – Woke up by alarm clock. Got myself ready for the day. Roused kiddo from sleep (tricky) and then gave him his liquid epilepsy medications and dressed him.
5:40 a.m. – Checked out of the B&B and drove to the hospital.
6:00 a.m. (okay, maybe more like 6:02 a.m.) – Checked into the surgical unit of the Boston Children's Hospital. A nurse led us back into the pre-surgery area, where she took kiddo's weight, height, blood pressure, temperature, and oxygen saturation level. She handed me a hospital shirt and pants to change kiddo into.
6:30 a.m. – Waited to speak with kiddo's rehabilitation doctor and the anesthesiologist. Watched cartoons.
6:45 a.m. – Anesthesiologist came to talk to us. I found out kiddo would be getting anesthesia via a mask. Was informed of scented options; requested strawberry. Signed a consent form.
7:00 a.m. – Rehab doctor came to see us. She asked kiddo to walk a few steps, and she examined his left arm. She informed me that she would be giving him 2 injections of Botox in his left leg (hamstrings + calf) and 2 injections of Botox in his left arm (biceps + wrist area), plus 1 injection of phenol in his left hamstrings. (The phenol would allow her to inject Botox in a greater number of sites without overdosing him.) Signed a consent form.
7:30 a.m. – Two medical staff wheeled kiddo, still on his patient bed, to the operating room; I came, too. In the OR, the anesthesiologist's assistant held a mask up to kiddo's face. Someone asked if kiddo has a favorite song. "Wheels on the Bus," I said. All 5 or 6 medical staff members in the room and I sang "Wheels on the Bus" as kiddo drifted quickly off to sleep.
7:35 a.m. – I went to the OR waiting area, where I got some much-needed (and free!) coffee.
8:15 a.m. – Kiddo's rehab doctor came into the waiting room to inform me that the procedure had gone well.
8:30 a.m. – A nurse led me back to the Post-Anesthesia Care Unit, where I got to see kiddo. He woke up for a little bit, groggy and cranky, and then soon went back to sleep. The nurse explained that coming out of anesthesia, he might experience nausea, vomiting, tiredness, and/or pain at the phenol injection site, and she gave me print-outs with information, including who to call if I had concerns later in the day. She also gave me the rehab doctor's instructions for physical therapy for the next 3 weeks.
9:30 a.m. – Changed kiddo into his clothes and wheeled him out of the unit.
9:45 a.m. – Went by the aquarium in the hospital lobby, at which point kiddo insisted on standing up to look at the fish.
|a little wobbly post-anesthesia but otherwise okay|
11:00 a.m. – After driving through Boston traffic and getting lost, arrived home!
12:00 p.m. – Kiddo walked to his place at the dining table, indicating that he was hungry. He had a light meal: plain toast, saltine crackers, part of a banana, and some apple juice. We spent the rest of the afternoon intermittently napping and low-key playing at home. Kiddo was in an overall good mood and showed no signs of nausea or discomfort.
Overall, the trip and procedure went smoothly. At only 6 days post-procedure, it's too soon to tell whether the Botox has helped kiddo; according to his rehab doctor, it could take 2 weeks before we start to see effects. She'll re-evaluate him at 8 weeks.
If Botox does help kiddo, I have no qualms about doing it all again.