A Day in the Life

It was only five forty five a.m. when I went in Dear Son’s room and found him on the floor, totally under the bed with only his legs visible from where I was standing. It was not even ten minutes earlier when I had turned on the television for him and everything was just fine. He’s an early bird, often getting up very early in the morning and television is sort of a last resort in terms of keeping him quiet. Six a.m. is the time when I have to be up so he’ll make it on the bus by 7 a.m.

I wondered how on earth he managed to fall out of the hospital bed and if he was hurt. The hospital bed has a side rail for the top half of the bed, which I always have up when he’s in bed. I wondered how I would get him out from under the bed without injuring my back. I could not use the sling or Hoyer lift since I couldn’t begin to get the sling under him in that position. Not only that, I wouldn’t be able to bend down to even do it. I wondered how many more things I would have to endure this month, in the first four weeks after back surgery. My mind recalled the events: back surgery and going home the same day, wow, that was hard. Next, having ten days to recover before going back to work and then on day thirteen day, getting Dear Son back home from the Respite House. That first day home was very hard since I couldn’t bend over and the slightest bend, such as giving him his medicine, was excruciating. I figured it I could get through that, I could send him to school the next day and at least, school would care for him during the day and I would only have to manage things at home for the remainder of the day. But it didn’t happen that way. He got sick the next day at school and had to stay home for the next four days with bronchitis and an upper respiratory infection which meant I had to care for him twenty four hours a day, less than three weeks after back surgery. And now this. How on earth would I get him off the floor?

Dear Son is very quiet when things are wrong or he is in trouble. He never says a word. While most kids might yell or cry, he does none of it. He sits or lies there extremely quiet, until you notice something is wrong. His hands/arms don’t work, so he doesn’t do things quite like you or I. If he falls down, he just falls down, right on his head, since his arms and hands don’t break the fall, as he has no reflexes. So this was very scary, seeing him lying under the bed.

I talked to him and then told him to hang on while I called his Dad. Dear Son’s Dad works in the area and is around fifteen minutes away. He works three days a week, twelve hour shifts and thankfully, this was one of his days. It was now six a.m. when I called him and he had just arrived in the parking lot. I was thankful he was always early to work, especially on this day. He agreed to come over to get him off the floor.

While I was waiting for him, I checked Dear Son out. I have a little game I play with him when something happens. I basically take my hand and tap on all his body parts and ask him if everything is o.k. He usually smiles so I know things are fine but if he were hurt, he’d probably flinch so I have to watch his face.

Had Dad not been available, I’d have to call 911 to get him out from under the bed. I surveyed the bed to see how this might have happened. The head of the bed was up slightly, to assist him with his reflux. That causes him to slip down to the middle of the bed and he had gone to the bathroom and his diaper had leaked thus getting the pads on his bed wet and with his bodyweight and any movement, was like a giant slip and slide and he sailed off the bed. That’s just my guess. I honestly didn’t hear a thing which was unusual because our apartment is only 750 square feet.

Once he was off to school, I finished my morning routine and was off to work. That evening, the seizures would start and it would be the start of several days of virtually no sleep.

I give meds five times a day. I give meds at 6:30 a.m., noon, five p.m., eight p.m. and midnight. Then I go to bed somewhere between midnight and one in the morning. On this particular night, I went to bed at midnight only to wake up at one a.m. with Dear Son yelling out. Living in an apartment, I can’t have him make any noise so I jump up right away to see what’s wrong. At fifteen, his voice is very deep and not only that, extremely loud. He doesn’t vocalize much during the day, but at night, he’ll really yell out. There is nothing worse than being asleep for one hour and then having to get up. It’s long enough to just get to sleep and to be sleeping well, when it’s time to get up. I jumped up and checked him out. Sometimes, just turning him over does the trick. He can’t roll over so I need to roll him over and lift up on his hips to get him totally on his side. If he’s on his back at all, not only will he choke on his saliva, but he gets very agitated and almost seizure like, so it’s not an option. Getting up at 1 a.m. was just the beginning. I was up at 1:30, 2:15 a.m. and then somewhere around 3 and then at least another twenty times from three to five a.m. Anytime he wakes up, you have a series of scenarios that play out in your head. Basically, you want to get back in bed as soon as possible. You hope you just have to roll him over but sometimes, he needs a diaper change. If the diaper is wet, you hope it hasn’t leaked. If it has, then that means a shirt change, diaper change and changing of the pads. The pads aren’t bad unless he leaks through them all and then you have to change all of the sheets in the middle of the night. The worse case scenario is the dreaded bowel movement in the middle of the nights since this requires the most work.

I get up the next day and manage to get quite a bit done. I decide to try taking him for our first walk since my surgery. I push him in the wheelchair and we walk over two miles around the trail on the golf course. Dear Son is almost 160 pounds so pushing him plus a 100 pound wheelchair is getting more difficult. So far, so good, and no back pain. The day goes on and I put him to bed that night only to repeat the same scenario of him getting agitated, having seizures and then being up some fifty times at night. After four sleepless nights I call the neurologist.

Dear Son has intractable seizures which means they aren’t controlled by medicine. He also has a Vagus Nerve Stimulator implanted. The VNS is great however we still experience episodes like this where he has periods where he’s extremely agitated, some of which go on into seizures.

I often worry about Dear Son during times like this. I wonder what exactly is going on in his head and wonder how uncomfortable he must be. It’s also extremely hard caring for him, especially with little or no sleep. In the past four nights, I haven’t slept more than two hours in a row without interruption. It makes it very difficult to go to work and to exercise. I started exercising again and took Dear Son out walking both Saturday and Sunday, forty minutes each time. I also managed to exercise on the treadmill yesterday and today plus work every day this week. This week has been hard too, because he’s getting so big for me. It takes a lot of energy to roll him over, to get him dressed and to transition him. And nothing is particularly easy.

I wish now that I had some nursing care on the insurance plan. I don’t have any but it’s getting pretty hard now that he is so physically demanding. And that’s what makes me wonder about Brittany Spears and other celebrities.

They have it all. They have celebrity, they have money, they have nannies and they have normal kids. It doesn’t get much easier than that. They are blessed. And yet, they don’t have it together.

I looked over at Dear Son, now sitting and smiling in his rocker and I see how happy he is. I look him in the eye and he stares at me and smiles right back. I then talk to him and tell him how cool it would if we could switch places for a day and he could talk and I would listen. I go through all of the things he might say and he begins to smile and then to really laugh as I describe for him, what that day might be like. We laugh together.

Our life is good. Yes, our life is good.