Dear Son Medical Update~Status Quo

Things continue to be fairly tough. On Friday night, after one day of the methadone, Dear Son continued to cry out all night and it didn't seem like things were getting better at all. The day was better but nights are worse. He starts fussing and crying out in pain and finally I have to get him up and put him in the recliner. That helps somewhat but doesn't take away any of the pain.

Last night, it seemed like he might be making some progress in terms of the methadone withdrawal. He cried out less however I still had to sit him up in the recliner from 1 a.m. on. Because of his breathing issues, he's not able to recline at all so he sits up in the chair upright all night.

I guess one of the biggest concerns I have at this point, is his respiratory issues. He really can't clear his airways at all and when he lies down in his bed, you can hear the noise from the fluid. It doesn't seem to help enough when I do the chest pt, yes, it makes it better, but not enough to where he can really sleep in bed or lie down very long. When I put him in the chair at night, he deosn't have enough strength to cough. He couldn't cough at night prior to the hospitalization so this isn't anything new. Sitting upright at least keeps the fluid from pooling in his lungs but other than that, he really struggles.

Still another concern is that of the swelling of his foot/ankle. Prior to his hospitalization, his left foot would swell. Now the swelling has expanded to his ankle and leg sometimes getting to twice it's size. His left leg was so big that I couldn't pull his sock up over his calf. I am not comfortable with that at all however several docs have assured me that this is not a big concern and happens in people who can't move around. I can understand that however if that's the case, I would expect both his left and right feet to swell equally and that is not happening. In addition, I can't keep it elevated because he can't breathe when I lean the recliner back. When he lies down in his bed, the swelling never really goes away. He gets up and it's still swollen. This is a picture after he just got up so the swelling should be down; you can still see the swelling in his left leg, foot and ankle. We see Ortho Doc and Ped Doc on Tuesday so I can have Ortho Doc check his ankle to be sure he hasn't twisted it somehow when Dad lifted him into the car. The clinic appointment was made some time ago so I just left it.

He certainly is not himself and hasn't been since this whole thing started. He's normally a very happy boy and there is nothing at this point that makes him happy. I don't feel at this point that a full recovery is anywhere in sight. It is taking a lot of work just to keep him breathing comfortably. I speak with the doctor tomorrow and it's hard to say if things are really better.

I am also going to see if Dad can take Dear Son for a night this week so I can get some sleep. He hasn't taken him at all since we got home on Thanksgiving Day. Typically, he gets a little nervous when Dear Son isn't doing well and doesn't like to take him. I am o.k. with that however I don't see any end in sight here and I have to work tomorrow. It's brutal going to work without any sleep. I have reduced my work schedule to one day a week indefinitely but I still need to get out of the house on occasion. Dear Son's Dad watches him so I can work and he's not too thrilled that he'll have to babysit indefinitely. He helps me with doctor appointments and other things but sometimes I just need a break.

FYI-You may also note that I often include a note at the bottom of my posts regarding Dear Son's diagnosis or medical condition. Since this blog is frequently picked up by different publishers, it gives new readers background information on Dear Son.

Note: Dear Son is eighteen and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene; he also has a progressive neurological disorder. In November, he got the swine flu and a viral pneumonia. As a result, he was intubated and spent over three weeks in the ICU. He came home after a month in the hospital. Because of an abrupt weaning of Methadone in the ICU, he now is suffering withdrawal and they have re-started it again so they can wean him gradually.