A journey into the world of pediatric chronic pain - a continuation
I shared back at the end of March how my world went topsy-turvy on me when my daughter’s knee injury, now healed, triggered a case of pediatric Complex Regional Pain Syndrome, CRPS.
And we wait
Since then I’ve watched rather helplessly as school work from missed school days piled up and as her peers decided she must be faking at this point since she still sometimes needs a cane to get around. The stress is eating away at my silly and creative girl and stress makes everything worse.
Sometimes I wonder if the pain is really that bad, I guess this is somewhat common among caregivers. But then I catch her flinching from rain drops or from one of our cats brushing against her leg. Or having her sit down in the aisle of a store because taking one more step is really too much. Her skin tingles, itches and burns for hours. Her limbs turn red or purple or grey and swell. Her feet go numb and her hands go numb. She’s dropping things and she’s scared. Since my last update, the CPRS has spread to both legs and now both arms.
I just want to give her a hug or a loving rub on the arm. But even that is painful for her.
So, the last two months have been hard. She no longer wants to go back to school at this point. I remember sharing last year that she was so excited to try out public school and make some friends. Now it’s her number one dread. She held it together for the school play (which she auditioned for on crutches and did fantastic with). But fell apart after the last show. I thought for sure that she wouldn’t go back. But after a mental health day she wanted to keep with it, at least until the end of the year.
On the brighter side, she’s recently taken up yoga with a beloved aunt. Though some of her friends from earlier in the year have decided to fade away she’s found new ones. Ones just as silly as she is.
I am so glad we decided to use Boston Children’s for her care. Given the severity of the symptoms and that out-patient Physical Therapy and CBT Therapy aren’t as effective as they’d like we were recommended for the in-patient Pediatric Pain Rehabilitation Center, PPRC. Getting all the paperwork and recommendations in order took a while. I am so thankful that my husband dealt with the phone calls back and forth. We finally got on the official waiting list at the mid-May. So we settled in for a long wait, since it can take a while for a spot to open up.
With the plan of keeping spirits up, in early spring I signed my daughter up for fun things to do during the summer. An outdoor camp to build a fun shelter village, a mystery crime lab camp, and a musical theater camp. A trip with the family to Atlantic City, NJ.
We had a group orientation zoom call with the PPRC a week after getting on the waiting list. During the call we went over what to expect and that they only have 10 kids in the program at any given time and that we shouldn’t expect to get in until the fall. That’s fine. I already had summer plans squared away and we could hold on until the fall. If we had to.
But after the orientation we were informed that a spot had opened up and it was ours if we wanted it. The catch, she would need to start in one week.
Frantic preparations
So we frantically made arrangements. She would miss the end of the school year, so we needed to get the school on the same page. We live close-ish to Boston. But it is no where near an easy commute and this program is no cake-walk. It is an intensive 8 hour per day program with home exercises every day. A caregiver needs to be available for in-person meetings with the care providers for an average of 7 hours a week. Could we handle four hours additional in the car, since Boston traffic is ridiculous during rush hour(s)? Everyday? For 3-6+ weeks? Probably not. My husband and I have full-time jobs, albeit remote ones, and a son with his own schedule and homeschooling to finish for the year. But that’s not going to stop me.
Week one we stayed in a hotel with family helping to watch my son. Next week we should get a time estimate for her length of stay in the program. From there we will make adjustments and make it work, alternating weeks with my husband being in Boston taking point on the PPRC program with me up in Boston.
I’m going to follow up with a separate post detailing our time in the program. It might take me a while though, even week one is far more emotionally draining than I thought it would be.
Dispatches from the fleet
What passing ships signaled back
Unfurl the messages