Dear Son Medical Update #12

Things are starting to improve a bit. Yesterday, I had to work and Dad watched Dear Son for a few hours. He was alert most of the day and even smiled when I came home from work. That's the first time since I left the hospital.

The nights remain pretty rough however. I had been doing chest pt and the nebulizer every four hours, and thought perhaps we could stretch that a bit at night however that's not proving to be the case. He really has a hard time lying down, despite the fact that I have his hospital bed raised up to the highest position. At 1 a.m. I did his chest pt and nebulizer and had hoped that perhaps he would sleep some six hours or so however that wasn't the case. He started choking around 2:30 a.m. so I got up and did some chest pt and then I was up again around 3:30 a.m. or so. It's hard too when I turn him over on his left side.

I am having to sit him up in the recliner for over twelve hours a day. His oxygen saturation is a bit better when his feet are on the floor however his left foot has started swelling quite a bit so now I try to lean him back in the recliner but he tends to cry out somewhat as it's harder to breathe. The recliner is also pretty boring for him however he can't tolerate lying down. I just put him down now so I'll have to get him back up around 1 a.m. for a few hours.

He's also having a few seizures here and there, but I am using his vagus nerve stimulator to control those. Fortunately, Ped Neuro Doc increased the settings prior to us leaving the hospital, so I think that helped.

He seemed a bit tired today and not as alert. He did perk up when I brought out his Mr. Christmas Santa Surprise music box today. He listened to that for a while while I put up some Christmas decorations.

I certainly feel more comfortable now, at least during the day. I have a digital pulse oxygen meter that I got from a nursing friend of mine, and his oxygen saturations are starting to improve a bit. I got it on Saturday and back then, his oxygen saturation was only 90-91 at it's highest and 87-88 when he had difficulty breathing. Now, it's up to 93-94 during the day, which is an improvement. He still cries out at times and I've noticed that it's only 87-88 then. His saturations decrease at night of course since he's lying down which is still problematic for him however the fact they are increasing during the day mirrors the fact that he just looks a little better.

So overall, I think he is on his way. I'll be glad when we get to the point where he can make it through the night breathing wise. That way, I'll only be up when I have to turn him over.

Our cat Wiggles however is a bit of a problem. I don't think I mentioned it before but when Dear Son went to school, I'd be up early to start his g-tube feeds and then I'd go back to bed until 5:45 a.m. or 6 a.m. when I'd have to get up to get him on the bus by 7 a.m. Well, I gave the cat some positive reinforcement twice a few months ago when he got me up at 6 a.m., so now the cat wakes me up at 6 a.m. sharp every day despite the fact that there isn't any school. He stands at my pillow and meows until I get up. In addition, he doesn't like me doing chest pt on Dear Son. He bites me once every time I do it; I tell him I am not hurting Dear Son but I don't think he believes it.

He is giving Dear Son lots of kisses though. He comes over and meows when I start chest pt and I have to take him over and rub Dear Son's hand over his fur to pet him. He watches over Dear Son all the time. When he was in the hospital, Wiggles used to stand out in the hallway looking for Dear Son to come home. When he didn't, he'd walk around the house crying. He's much happier now.