Recovery
Days four to seven turned into a blur of chills / fevers / sweats and repeat. The surgery team showed me how to use the limb lengthening device on his leg. It wasn’t difficult, but everything felt so new and scary. How much could I move his leg without shifting anything inside? How would I put his brace on and off without sending him into spasms of pain? It was a huge learning curve to determine exactly where to hold his leg and how to lift and transfer it, how far to lower it if he just needed to use the bathroom to create the least pain. Getting in and out of bed was a challenging, multi step process. His leg needed to be supported the entire time and when he was ready to get back into bed he needed a stepstool brought over and stabilized while he used it to push off with his right leg to get back in. How in the world were we going to do this at home?
Physical therapy would get him up once a day. On day four they pulled the epidural and he walked down the hallway a good distance. He was almost sweating with the exertion, but he powered through until she made him stop.
When we got back to the room she realized his heart rate was sky high. That afternoon the epidural continued to wear off and his pain level escalated rapidly. They started him on a very low dose of narcotic since the only other time he’s had them was after his biopsy. It wasn’t nearly enough and he was miserable. At bedtime the nurse and I spent almost an hour making microscopic half inch adjustments with his leg until my own back was on fire, adjusting the pillows over and over trying to get him comfortable.
That night felt so low. Liam was in so much pain. There are almost no private rooms at Sloan and the ones they do have are reserved for bone marrow transplant patients. Our roommate was young, maybe five, and he cried and cried that his belly hurt. “I’m going to die. I want my mom. My belly hurts. I need more pain meds. No, it’s not going to help. Help me. My belly hurts.” Meanwhile his dad ran video games or the TV eighteen plus hours a day. When he went for a CT I thought surely we’d have at least a few hours of silence, but nope, he left it all running in their absence. Liam and I felt so sorry for his terrible pain, and simultaneously wished so much for our own selves to have silence. Hospitals should never be built without single rooms for everyone. No one feels like sharing a room with a stranger. It’s a thousand times worse when you’re sick.
It really started hitting me what a long haul we’d signed up for and how very far away I was from almost everyone I know. I missed the nurses at UVA who knew us and would stop by to chat even when Liam wasn’t assigned to them. I missed our oncologist. Everyone here is so nice, they’re just all still new.
There’s also a different feel in the hallway. It’s heavier. I suspect if it weren’t for Covid there might be an even greater camraderie since everyone is fighting cancer; but Covid is reality and you hardly ever see anyone. There’s less laughter. It’s just heavier.
Late that night our roommate got transferred elsewhere. They came in to clean the room at 4 AM which meant super bright lights. That was it for sleep for me. Within a few hours we had a new roommate who was much older than Liam and mercifully both he and his mama were silent.
On Day 5 Liam walked even further down the hallway in spite of how much pain he was having from the epidural being gone. He knows that movement is the key to recovery and full range of motion and nothing stops him. He came back and was sitting in the chair for less than twenty minutes when the pain and muscle spasms increased so intensely I didn’t even know if we could get him back to bed. The nurse was trying to help him stop hyperventilating and coaching him through our transfer. It was awful.
The pain team came in and got him on meds for nerve pain and muscle spasms and increased his oxycodone. The surgeons told him he needs to back off a little on his activity. It’s going to take a bit for everyone on his team to learn to back him down instead of letting him go his own pace, but less encouraging him to do more! That day was a rest day.
Finally by seven in the evening I felt okay about going downstairs for a coffee. He was back to smiling and messaging friends. I realized again that we’re going to be ok up here. It’s crazy the way a mama’s body just shuts down when her child is really ill or in significant pain. I can hardly move. I don’t want to eat. I can hardly make myself walk down the hallway to go the bathroom. And as soon as he feels better, the entire world looks better.
Day six we were back to making progress. A nice long walk down the hall. He started eating a little better. And his pain was down to a 2-3 if he held perfectly still in bed. We learned that he needed to stay down at a 2-3 in order to be able to move. He can hold still in bed with a 4-6, but it takes all his coping skills and he has no reserve to sky rocket even higher with movement. Even so, he sometimes hit an 8 or 9 on a scale of 0-10 with walking. He is so tough!
That day back in Virginia, David and our friends loaded their maxi van with boxes and boxes and boxes of our stuff and our mini van with the kids and moved us to New York City. I can’t imagine driving with the four kids, alone, from Virginia to New York with three of them being so little and one of them not even two. My hat is off to him. The trip was fairly uneventful until they were about a mile from the apartment. They got stuck in a traffic jam and Harrison got car sick and vomited. Bella took one look and followed suit. Which meant David was moving into the apartment four floors up without me, and starting it out with two puky little ones and car seats.
I was so grateful our friends were still there and Janelle bathed the little ones while the men unloaded the vehicles.
Day seven was Christmas Eve and we got our Christmas Miracle on 67th Street! Liam had his JP drain pulled from his leg and we were cleared for dishcharge as long as all went well until afternoon. I went downstairs for a latte for me and a hot chocolate for him. We donned reindeer antlers and recorded part of, “I want a hippopotamus for Christmas,” and in the afternoon Child Life took us downstairs to the basement where the engineers have set up a phenomenal Christmas light show! He loved it and it made the time go so much faster!
At four our ambulette drive arrived to take us home! He was quite taciturn and tried to make me pay an extra $65 for going alone. I had no backbone left from sheer exhaustion, but the nurse said that’s ridiculous. She called the discharge liason while he kept saying he’s just doing his job. I wasn’t in the mood for a grouchy driver, but I’ve learned you don’t mess with nurses. They will advocate for you when you can’t do it yourself and the next thing I knew the driver was handing me his phone and I was explaining to the owner that I hadn’t requested a solo ride, I’d just told them I have a lot of equipment. He could pick someone up if he wanted to, but we had two suitcases, two backpacks, a box, a suitcase with the limb lengthening device, a wheelchair, crutches, and a walker. “Ok, you don’t have to pay and there’s no one else looking for a ride right now so you’ll be alone anyway.” OOOOOkkkkkay?
We headed down with our mountain of gear. The nonplussed driver took Liam around to the back to get him loaded and strapped in his wheelchair while the nurse and I waited with the cart. When he got back to load the gear he was shaking his head and laughing. “That boy just told me he thinks I look like Lamar Jackson,” and he chuckled again. Once again, Liam had charmed someone within minutes. The entire way home he and Liam discussed everything from football both professional and how they both played for fun, the music they’ve played, and facts about New York City. “How old are you?” he asked. “Twelve.” “You are very mature for a twelve year old.” And then they chatted some more until you would have thought they were old friends.
And just like that, we were “home.” I’ve never been so happy to hug my people and rock my baby to sleep!
