“You are doing really well.”
The words hung in the room. I wasn’t sure how to respond. It was a rather unexpected comment as the doctor was getting up to leave.
It was the end of a three hour clinic visit – my son’s last clinic visit at the pediatric rehab hospital where he’s been a patient for almost 17 years. The doctor had gone through the reports from the occupational therapist, the physio and the social worker plus all the outside referrals including the spasticity doctors, seating clinic, ankle-foot orthotists, headrest provider, cardiology and neurology. She checked off all the boxes, made sure there were no loose ends.
“You’re doing really well,” she repeated. “Parents often tell me how hard this year is.”
“This Year” – yes, it deserves capitals – is the transition out of the pediactric health care system into the adult system. For 18 years, we have been very well taken care of. Between the rehab hospital and our local children’s hospital everything has been covered. It doesn’t mean I haven’t had to repeat Deane’s medical history – or at least parts of it – many, many times to the different doctors at different institutions, but I always felt we were well looked after.
Now, we have to re-invent the wheel. Each one of Deane’s doctors want to see him one last time before his 18th birthday. Since January we have had 22 doctors visits – more than one a week – and that does not include the additional appointments from adult doctors wanting to get baseline evaluations.
How does anyone do this and hold down a full time job? These appointments aren’t quick things you can do during your lunch break. Typically they take half the school day and often mean your child staying home or coming home early – further disrupting a parent’s and child’s schedule.
In addition to the sheer number of appointments, there is the challenge of keeping the interrelated ones all moving in the right direction in the right order. The visit to respirology leads to a discussion of salvia management with the ear-nose-throat doctor which involves finding a new medication to control salvia before the sleep study to test a bi-pap mask to improve Deane’s carbon dioxide levels.
And if the medication doesn’t work, he could have botox shots in his salivary glands to reduce secretions while he sleeps. But he is also getting botox in his calf to try to help flatten his foot while standing. Can these two injections be done at once? If not, which one should be first? Right up to the day of his injections – despite many phone calls – no one could answer my question.
Now after his calf injections, I have to get back on the phone to see if the children’s hospital will still do his salivary injections. I’m told the hospital has a hard cut off of treatment at a child’s 18th birthday. On top of that, this doctor’s transition plan was to tell me that the adult system doesn’t believe in full anesthesia to do these painful injections.
And then there is also a whole new funding system to apply for and navigate.
Many times this year I have felt like a juggler desperately trying to keep everything in the air. Deane has been awesomely patient in appointments that are a lot more talk than action and super brave during those that did involve poking and prodding.
Deane’s 18th birthday is now less than two weeks away and there are still many balls in the air – this week alone there were four appointments. I appreciate the doctor’s vote of confidence, but it feels like every pediatric ball I set down, the adult system tosses up another. Yes this is a very hard year. I’m glad this transition only happens once.
With all this focus on him turning 18, it’s hard to find time for his birthday. Thankfully, his resourceful sister has an elaborate list and plan for his party. Now that’s an appointment we won’t mind keeping!