The new normal
Over the weekend Wes seemed to be rebounding from the end of his dex treatment – mood, interest in food, and activity were all getting better than they’d been in two weeks – but he also started running a slight temperature. Numbers that normally wouldn’t even be noticed have become signs for monitoring, and slightly elevated numbers for any extended period of time can mean a chat with an on-call nurse or even hospitalization.
By Sunday morning his numbers had crossed the low-end of a threshold for us to call-in, but we were still mentally unprepared for the response: bring him in through emergency. We had just cleaned the car and packed it with our “go” kit so departing was easy. To calm our nerves on the hour drive to CHOP, we listened to the “Casefile” podcast – Stephanie is in love with the host’s baritone Australian accent.
The emergency room staff were prepped for his arrival, so by the time I parked the car Wes and Stephanie were already in a room with a nurse. It was a mostly new set of faces, with a few people we had met before, but the feeling was one of familiarity, even déjà vu. The Child Life Specialist had even found his favorite ER toy already.
Wes was pissed, to be sure, to be back, and even more so to have his vitals taken again. Those blood pressure cuffs are instant triggers for him, and he’s not a fan of the digital heart rate monitor they slip over his toe. Eventually, the staff accessed his port to take blood, and then provided him two different antibiotics. After an hour or so we were finally told what we expected – they were prepping a room for us upstairs on floor 3 (where we’d spent the week before, in oncology). We were expecting and prepared for a stay-over.
Once we got to the room – even larger than before – he cheered up. I brought up our things. I had work the next day, so I planned to head home with the car, and then return Monday evening to pick them up. The cafeteria was open, so I took the opportunity to bring up some fresh foods – sandwiches, fruit, and a big bowl of rice – in case we missed the chance later; I scored some room service meal vouchers for Stephanie too, just in case. Patient meals are free, but family can either pay room service with a voucher, or run downstairs to the cafeteria; we usually prefer the latter, but if I’m not there it can be harder to get away with Wes in tow.
After a visit to the playroom to snag some toys – this time he decided he wanted all the magnetic fishing poles and fish to come back to the room with him – I said my goodbyes and headed back to New Hope for the night.
The next day Wes was doing great – good spirits, vitals right where they should be – but after a consult with the doctor it began to be clear he might not be coming home Monday, and in fact perhaps not until his current phase of treatment, induction, is complete. The plan right now has induction lasting through end of November – another 11 days or so.
Wes is fine – none of this is a regression or setback from his plan, it’s the kind of risk management we expect from the team, who are doing their best to provide him with a safe and effective recovery.
For us, it’s a stark reminder that there is no normal anymore – all good good plans go to waste when your overriding priority is the fragile health of your child. We knew that this could happen – that he would likely end up back in the hospital for something seemingly minor – but I still had not entirely accepted the reality. It’s starting to become clear now.
Stephanie is camped out with Wesley in Philadelphia for the duration – I don’t know what either of us would do without her, and I’m so thankful she can be with him full-time and not pulled in opposite directions by a job. I’m home at the moment, but will be there tonight or tomorrow night and as long as I can while we figure out logistics. Perhaps I’ll get a hotel in the city, or sleep in the room with them but use a co-working space during the day so I can still get my work done. All TBD.
Thanksgiving is Thursday and, like Halloween last month, we’ll likely spend it with the amazing patients and staff of CHOP rather than at home with my sister’s family as planned. C’est la vie. The new normal is all plans are subject to cancellation.
