Two Years Ago, Today.

Two years ago I went to sleep on the night of January 20th, totally exhausted, but happy that the next day was a Friday. Fridays meant that I didn't work so I just had to take care of Nathan and we didn't have any doctor appointments so it was only the ever-present cycle of medication monitoring, diabetes regulating, heating pad/pillow adjustment and whatever else Nathan needed or would let me do to try and make him more comfortable.

He hadn't been able to sleep lying down in months, so I went to bed alone, as usual. I hadn't slept next to him for about three and a half months except once at the hospital when they moved another bed next to his and let me sleep in it. That was one of the hardest things, because we were always touching while sleeping. Sometimes it was just an arm or a leg but we were normally completely tangled up with each other. Even now I ache for the comfort, reassurance, and safety that sleeping next to my husband gave me.

I went to bed around two, I think, after either taking off or putting on his compression socks- not sure which, now, either was nearly a form of torture for both of us. Nathan slept- what little the pain would let him sleep- in the living room in his recliner. At this point I was always so exhausted and he wasn't able to yell loudly enough to wake me up if he needed something so he would call my cell phone (which I kept by my pillow at full volume) to wake me up. When my phone rang I would roll out of bed not even completely conscious-  just knowing he needed me. I controlled the pain meds at this point. Not because he might have gotten addicted-- he was hurting enough that wouldn't be possible, but because he wasn't lucid enough to remember things like how many he had taken and what time he last took them at. Even I had to write it down- there was so much to remember.

He usually needed me once or twice a night... if the pain was really bad a lot more often than that. At this point Nathan had the walker and we had a toilet riser and handles around the toilet, but he still needed my help. So there was usually a bathroom trip in the night. The bathroom was ten, maybe fifteen, feet from his chair. The trip there and back completely exhausted him and would usually take at least thirty minutes. It had taken up to an hour before. There are so many things about ambulation that we just take for granted. Nathan needed the walker even to get around our tiny apartment and he hated it so much. This was the guy who would play Ultimate Frisbee for hours without stopping. Who would chase squirrels and climb trees for no reason whatsoever.

Anyway, on this night I went to bed at 2AM, hoping that we might be able to get three or four hours in before the next pain med dosage. I was shocked when I woke up at 8AM and Nathan hadn't called me. I went into the living room and checked on him, but he was sleeping... well, it never looked comfortable, but peacefully. I was so excited. I thought maybe we were hitting an upswing. He'd done so well immediately after the bone marrow transplant. I just wanted him to get past all this terrible pain and start feeling better. I went straight back to bed, after I knew he was ok. In hindsight I know that he was sleeping so well because he could no longer feel the worst of the pain, but I didn't know that then and I was so tired and so happy.

He finally called me again at noon. Later, I would be so grateful for all the sleep I'd gotten that night, because when he called me and I stumbled into the living room he told me that he couldn't move or feel his legs. He had to explain it to me twice, because I couldn't understand it. I didn't understand how someone could become paralyzed from the waist down overnight. And then I freaked out. I totally and completely freaked, and he was there, making me come over to him so he could hug me. Telling me that it was going to be ok. Calming me down so I could call his bone marrow transplant physician at Barnes and then the ambulance to come get him, and his mom so she knew what was happening. He did that until the very end, always the one offering comfort rather than asking for it. Such an incredible man.

We spent the rest of that day in the Springfield ER, figuring out what to do and then they decided to transfer him to Barnes. Paula arrived and we ended up driving to St. Louis at around midnight, and spending most of the next day in their ER. Nathan had surgery Saturday night to try and drain the fluid around his spinal column that was pinching the nerve and not allowing him to move/feel his legs. He was sedated for the pain (and I think his O2 levels were low so they had intubated him as well?) at that point so Paula and I decided that he would want to go ahead with the surgery. It would only give him an 8% chance of being able to regain the use of his legs, and it was risky, but without the surgery he had a zero percent chance. After the surgery he would have had to wear a back brace for two months or so, I think, but we agreed that if there was any chance then Nathan would take it. He had to be able to run again, someday. He had to.

I didn't sleep until Sunday morning I think. He made it through the surgery well, but we wouldn't know if it had done anything until he woke up and probably not even then, what with the swelling brought on by the surgery. They brought him out of sedation sometime on Sunday, and his legs were the same, but we knew there might not be immediate results. Paula and I set up a rotating shift at the hospital.  I had nights and I'd come in whenever I woke up for the days, but that way Nathan was only alone during the ICU mandated "no visitor" hours and we could speak to the doctors whenever they came in. Nathan was still highly drugged for all of this, which offered much laughter, even if it was slightly desperate laughter. At one point a male nurse was in the room, talking to Nathan about his pain and Nathan said, "Hey, When do I get my slippers?" The nurse asked him what he meant and Nathan said, "They said I would get some slippers. I want my free slippers, dammit."

The guy asked Nathan where he was and Nathan said he didn't know and the nurse said, "Well, Nathan you are at Barnes-Jewish. They don't give anything away for free here."

Nathan sort of drunkenly murmured, "Yeah, that's the truth." I just laughed.

He developed pneumonia at some point- one that antibiotics and anti-virals did nothing to fight, and the pnuemonia is what actually killed him, on the morning of Jan 29th. I'm not going to blog about the very last days.  If you want to know about them, you can read this post. I just haven't really talked about this part before, and I guess I sorta wanted to explain why I might not seem much like myself this week, or why I might make decisions that run counter to my "norm."

I guess I really just wanted to feel like I wasn't the only person who had this information. Like someone else understands, even if just by proxy, a bit of what it was like-- two years ago, today.