Louisiana Sandusky writes of things that have been happening in her life, mainly about her son, Johnny, who is in the hospital with a heart problem. She also writes about a lady she met at the Jerry Lewis Muscular Dystrophy Telethon, at the local television station, where she was manning the phone, asking for donations. (Her son, Johnny, the one who is in the hospital, suffers from Duchenne's muscular dystrophy.)
Wednesday, September 3, 2003~
I am so scared....Johnny is in the hospital, and I don't know how he is doing. He had another seizure, and he then had trouble breathing; and the doctors aren't telling me a damn thing.
I worry so much about Johnny because he is only a little boy, and he is so sick. He has a neuromuscular disorder, Duchenne's muscular dystrophy, and he was doing very well, but this morning, Bill (my husband) woke up to strange sounds coming from Johnny's room; and when he went to check in on him, he found our son in a serious seizure. He said that Johnny was jerking all over, plus his face was nearly black, and he was choking. He also said that Johnny lost control of his bowels and urine; it was all over the bed. When the seizure ended some time later, Johnny sounded like he was having a lot of trouble breathing: his chest was heaving erratically, and he was gasping for air, even though he had the oxygen on. He knew at once that Johnny was indeed in trouble.
Bill called for an ambulance, and the ambulance came and whisked our son to the hospital, and since then, neither Bill or I know anything. We don't know if he is okay, dead, or WHAT.
Later:
Dr. Shapiro, Johnny's doctor at the MDA clinic, has just talked to us; and it appears that the disease is worsening; it is starting to affect his lungs and his heart; it seems that his heart started beating way too fast all of a sudden, and it caused his body to react in a violent and sudden way. He had an episode of tachycardia, or abnormally fast heart rate, and he said that Johnny's heart rate went all the way up past 2oo beats per minute. Dr. Shapiro said that Johnny needed to be shocked two times to try to get his heart rhythm back under control. Johnny was now in the Cardiac Intensive Care ward, and he was resting comfortably. He said he was being given medications to try to stabilize his heart, and that he was now in a drug-induced coma, so he could rest. He was also on a ventilator, and he appeared to be over the worst of the crisis. He said that Johnny would probably be in the hospital for a few days, so they could keep a very close watch on him.
At the news, I cried. So did Bill. There is nothing more upsetting to hear that your son's disease is worsening, and that he had a problem with his heart. The heart is vital to life; and now, all of a sudden, our brave little guy was facing a future that was quickly becoming more clouded by the day.
It doesn't seem fair...why OUR son? Why Johnny? What did he ever do to deserve all this heartache in his young life? Why did his mother have to have that damn gene that gave her second son muscular dystrophy? Why didn't Erich, his older brother, get MD? Why does he have to get weaker each and every year? Why can't he no longer do things he once enjoyed, things like taking walks in the park, being able to play for hours without tiring so rapidly or getting so out of breath, or running around, just like any other little boy? Why does he have to use a wheelchair? He won't ever get out of it again, and it just means that much more incapacity for him!
On a much lighter note, on Monday (the first), Labor Day, we met a lady at the local telethon for MDA who was struggling with a neuromuscular disorder herself, and unlike Johnny, she was only newly diagnosed, only having the disease for a little over a year now. Her name was Lindsay Maureen Bower, and she was visiting her caretaker's parents (her parents were both dead). She was from New York, she said, and she had the accent to prove that claim. She had long reddish-brown hair done in a long pigtail, brown eyes, and was rather heavyset; she was quite a pretty woman. She had progressive muscular atrophy which mimics amyotrophic lateral sclerosis (Lou Gehrig's disease), but on a much less severe scale: people with PMA can survive as long as 20 years or more; the progression of the disease is much slower than that of ALS. She was having a very hard time; she was rather bitter in nature, but once we started talking, she started to loosen up, and she learned that she wasn't as bad off as she had first feared: there were people (such as my son, Johnny) who had more bleak outlooks. She, at least, had a chance of a somewhat normal life, and she had a wonderful lady friend, Traci, who acted as her caretaker; and she was nice, too. Traci lived in New York, too, but she was visiting her parents, and she happened to bring Lindsay with her. This was how we had met because Traci got sick and tired of Lindsay's attitude, and she decided to take matters into her own hands.
I shall have to go now; am going to see Johnny. He is still probably out from the medications, and he is still probably on the ventilator. Hopefully he is continuing to hold his own; will keep you posted on his progress.
Will you tell us soon? I want to know how he comes out of this. I hate to see little ones suffer. And no, it isn't fair. But fairness was never promised to us. And we do the best we can, and go on with our lives.
A wicked Cajun Fairy named Robes Pierre entered the impenetrable Magical doll land of Sha Bebe. Queen Faustina, the ruler of the doll land, thought she had destroyed him, but he's back! Will the doll land survive his evil ways?
