So today can be summed up with the image/feeling of me with my head on Jon’s chest, trying to sooth him, as he alternated between groaning in pain and trying to sit up and tear at his zimmers/epidural/catheter.

In hindsight, we can reconstruct what happened. The epidural started leaking on Thursday—maybe even Wednesday night post-surgery—but they were able to compensate by increasing the dosage and Jon had a good night last night.

But it was likely the wear-and-tear of shifting him from bed to table for the x-rays this morning that did it. By the time we got Jon up to his bed, he couldn’t get comfortable and you could see another site where the anaesthetic was leaking in a little river from the fine tube taped down along his spine. Then a tech came into examine his zimmers and she stroked his feet. Up until then Jon could feel a tap, but he showed no foot reflexes. When the tech brushed them, I saw Jon’s toes arch out. Uh oh, it looked like he was gaining fully sensation in his legs. And within an hour all he was suffering.

View from the X-ray Control Room

Our nurse Patti quickly started the protocol to get morphine going and remove the epidural. Powerful medications, so it takes time. So it was about two hours before Jon started getting comfortable again, but it wasn’t true comfort. The epidural removes sensation, the morphine just dulls the pain.

Jon has been pretty dopey the rest of the day. Despite the pain stress on Jon, nurse Patti insisted on getting Jon out of bed and into a wheelchair this afternoon. This is to get his body back into a more natural position ASAP, to aid in healing.

Last year, we were very impressed with how the hospital handles pain, especially compared to five years previously. Every morning you are visited by a triumvirate from the Pain Management Team, who assess and decide the course of the treatment for the next 24 hours and beyond. Of course, now we know that last time was the ideal situation — the epidural lasted well, and Jon’s pain transition was ideal. But epidurals are not predictable, and this time we got to see how they react when things are not ideal…and I’m equally impressed.

Because Jon can’t give a great introspective analysis of his pain, we can only read his body and manner and fly by the seat of our pants. In cases like ours, we are brought into the decision huddle and our opinions are given a goodly amount of weight. (From right out of surgery, we were brought in to consult on how Jon was reacting to pain.) So the pain situation may not be ideal, but we are a respected part of the process searching for a solution, and that makes all the difference.

Still, here at home, late on my off-night, my thoughts return to lying my head on his chest, trying to absorb some of Jon’s pain.

This is second-hand info from Peter’s phone call late morning and I hope I’ve gotten it straight: Jon got wheeled down to Diagnostic Imaging—in bed; no wheelchair quite yet—to get x-rays taken while his epidural is still in place (better to twist him into the correct position while he theoretically can’t feel anything).

Apparently there’s a lot more leakage from the epidural than previously, and the fact that Jon is in a lot more pain today seems to point to the epidural not working as well as it could. It looks as though he’ll have to be put on morphine and it will possibly set back our hospital release by a day. More details as we get them later.

Well, I’m able to post from the hospital tonight, so I will! The muscle spasms were quelled when I got here, but then got far worse around dinner time. He had more valium after dinner and really re-laaaaaxed. He started reciting his lines from Looney Tunes slightly slurred but with great enthusiasm. This went on for about two hours. Very funny, since it’s the first that Jon’s looked out of pain since surgery. It took Jon another hour to get to sleep, itching and pulling on his various tubes, including the catheter (ow!, but he can’t feel it because of the epidural). He’s starting to stir now (11:00 pm), and this may be the firt trouble of the night: all of his drugs need recharging at the same time and ACKKK the epidural alarm just went off, twice as loud as an alarm clock. Hey, Jon didn’t wake up. Well, we’ll see…signing off for the evening…arg, second alarm…man, it’s like mission control here!

Now back to our regularly scheduled topic…

Last night and today was a day of alternating calm but grumpy sessions and agonizing muscle spasms. The pain-management team has ratcheted up the levels of medication in his system a bit—more Tylenol, higher doses of epidural narcotic, and some valium-like medication in his I.V. for the muscle spasms (I forgot what it was called. I’m tired.)

Consequently, Jon was a bit spacey today, which made entertaining him a bit hit and miss. He wanted TV, videos, DVDs or videogames, but only particular ones. I picked up a handful of videos from the playroom cupboard; only Dora and Blue’s Clues would do. When a hospital staffer couldn’t find the Elmo Nintendo game that he remembered playing last time we were in hospital, Jon was downright snarky. He also developed an unattractive habit of calling “Nurse! Come!” in the same commanding tone he uses for Photon.

This would all be annoying except that much of the day he really is in pain: every time he gets repositioned in bed (every few hours, to prevent bedsores), when he gets his bandages checked, or otherwise gets poked and prodded by hospital personnel. Add to this the muscle spasms, his lack of sleep because of all the noise and taking of vitals every few hours, and you end up with an extremely ticked-off customer. And who can blame him?

(A very peeved aside here—Jon’s hooked up to a machine that monitors his heartrate, breathing rate, oxygen saturation, blood pressure, etc. etc. If Jon’s vitals change significantly (if his 0₂ level drops, say) it starts to beep loudly. I always assumed that this was something we’d just have to put up with. However, last night the machine was beeping so often that the nurse finally took pity on us and turned off the signal in our room, but still keeping tabs on him from the nursing station. I didn’t realize you could do this—why the heck don’t they do that all the time?!)

Surgery finished at 2:30, a complete success, five-and-a-half hours after we started, just like the surgeon estimated. A few hours in the post-anesthesia care unit, and an extremely grumpy Jon is now in his own room 5A27. Peter’s heading home in a couple of hours.