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.

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!

Well, we’re past lunch now and we’re still here, as families come and go. The Room seems lighter than past visits –a lot of the procedures are an hour or less, so the parents aren’t nearly as worried. The “lifers”–folks who in for 4-6 hours–have started to spot each other, but any small talk is subdued. Everyone is dealing with their stress as in their own little ways. Laura exaggerates me doing work 🙂 —I have one task that is the computer equivalent of folding laundry. Takes my mind off the moment.

Jon should be out in the next hour; when he’s past the groggy stage we’ll let you know, and we’ll also let you know what kid of hardware he’ll be wearing for the next six weeks. Stay tuned.