Things are starting to improve for Johnny, as noted by Bill, his father, but Johnny still faces a long recovery from his recent seizure event.
Tuesday, September 25, 2007, 5:37 a.m., D.S.T., Nashville, Tennessee~
Dear Journal~
Bill here. Just saw the doctor, Dr. Ram, Johnny's primary doctor, and there was a bit of encouraging news: Johnny is coming out of his spell; he kept trying to pull at the tubes in his throat, nose, and arms, and the nurses had to lash his arms to the bedrails. Of course, Johnny isn't happy about it. He keeps opening his eyes and looking around, but of course due to the tubes in his throat, he is unable to communicate.
Now the real test will begin, see if Johnny can follow the commands as directed by the doctors and nurses who are tending to him in the PICU. If he does well, that means he hasn't sustained any brain damage, which would be a huge answer to all the prayers that have been going on in his behalf.
I have been here at the hospital since yesterday evening; haven't been home yet. I know my wife, my inlaws, my children must be frantic with worry; yet I keep them informed by phone; I keep telling them what's going on with Johnny; that way they are aware of just how he is doing.
God, I'm tired. Bone-tired. I think when I get off my laptop here, I am going to lie down and try to get some sleep--that is, until the next Code: Blue goes off, jarring me from a sound sleep because I think it's Johnny who's in trouble.
So far that hasn't been the case. I hope this continues; I don't know what I would do if I were to lose my son!
Johnny has been through so much in regards to his health. It's a surprise he's lived this long; he wasn't supposed to live beyond the age of five; he's now headin' towards the age of fifteen; in fact, three months from tomorrow (December 26), he'll be fifteen--that is, if he makes it. Johnny has Duchenne's as you know; he has had so many health scares, so many crises, they just seem to meld together into one blurry lump; this seizure he had on Saturday is but the latest in a very long line of health scares.
The last crisis he had prior to this one was last December, right before his birthday: he had an episode of tachycardia (rapid heart beat) that caused him to have severe diffuculty in breathing; he was in the hospital for about three weeks with that one. Gave us all a big scare, but he got through it okay.
No, I think it was last April of this year, when he had his last major seizure. Yeah, that's it. I forgot about it until just now. Like his heart episode, he came through the last seizure scare with no trouble.
I just pray this newest situation plays itself out in the same fashion.
Johnny is getting so big. While he is still very small in comparison to most kids his age, he somehow looks older, wiser. He had his hair cut (still spiky on top and sides, but it's shorter), and just before he took sick, he got his ears pierced. Yes, both ears. He wears earrings now; I guess he wanted to look older or something. I don't really know about the earring thing, don't really agree with it, but I am not going to deny him the opportunity.
A lot of boys his age wear earrings; it's something of a fashon statement among young boys. I guess they think they make them look cool. He's also sporting a nice little Adam's apple, and his voice is lowering; it's no longer the high, squeaky little-boy voice he's had for so long.
Johnny is more aware of his physical body. I know he's bothered by the fact that he can't walk or participate in most sports (he does play baseball in the summer--or did--; he plays on a league for kids with disabilities), and I know he realizes that he is dying of a fatal disease; this upsets him, yet he has the knowledge of going to Heaven to be with Christ; this gives him a sense of hope, and he knows that even with all his problems, he is still a lot better off than a lot of people.
I worry about what he may be thinking, what he may be experiencing at school. As you know, he's in ninth grade now, a high school boy, and I am sure that he feels mighty small next to a lot of those kids. His smallness is only made apparent because he is in a wheelchair; he goes through life siting down.
Johnny's also aware that he is having more problems with his muscular dystrophy. It's affecting his breathing and has to use oxygen; he is embarrassed about it. He doesn't like to wear his oxygen tubing when he gets his picture taken; chances are he'll snatch it right off his face before someone takes his picture.
I wish I could somehow be with him as he navigates his way through high school, but I would only be holding him back, so I have to let him make it through on his own. Yet I can't help but worry about him; he is so vulnerable right now, so fragile, and I'm scared he'll get squashed like a bug by the big, cruel world.
Well, I am going to lie down now. I will write in here with another Johnny Update again tomorow or the day after; I really need to get some serious shuteye. Take care and God bless!
Always I read everywhere about the mother's pain whent a child is ill, it is refreshing, even if it aches the heart, that somewhat we remember the pain of the father.
Georg
Tears are forming at the corners of my eyes, reading this one: Bill's love for Johnny is evident in poignant words. The fear of death (from Duchenne's), wondering if the next medical crisis will be IT also comes through. The firey determination of a young boy determined to be a man, to live with disability, to not be lived BY disability...an excellent, excellent write. Well done.
(((HUGS))) and love, Karla.
Reviewed by chris stienstra
9/25/2007
God bless you Bill.
Johnny may be physically small, but, he is a giant in my book.
We will continue to keep all of you in our prayers here at my home in NE. Stay safe and rest as much as possible.
My very best
Chris
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