My son, Ethan Raymond, is in the hospital. Again. Seems that he had a bit of a breathing crisis. He's now past the critical stage; however, doctors have him knocked out, so he doesn't pull the tubes out of his body.
It's hard seeing him lying there, with only machines or wires keeping him going (that, and medicine/IV fluids), but we knew something was up the other day when I heard his alarm sound as I was finishing writing about him.
Now he's on the upswing (again), and I'm sitting here in the PICU, looking at him as he sleeps peacefully. I wish I could do more to help the busy nurses, or know what to do to keep this from happening again. It scares me each and every time because then I think he's dying on us.
Ethan has a rare neurodegenerative disease known as PMS (Pelzaeus Merzbacher Syndrome); he was expected to die before he reached the age of five; however, he's survived longer than doctors predicted. He's now eight years old, a living little miracle, and we have been enjoying him being with us for this long.
He's prone to gastric reflux disease, seizures, breathing problems, any number of problems; this is why he ends up in the hospital on a regular basis. Like now, with his breathing. It isn't easy having to sit in a crowded waiting room as we wait the fate of our son; yet each day that he lives, each day that his condition improves, then we can live with that, go on as best as we possibly can.
Last night was really the first good night since he was admitted to the hospital. Vital signs remained stable, no periods of vomiting, apneic breathing, no seizures. Nurses have been administering his medications regularly, checking his vital signs every four hours, like clockwork; they have been doing a wonderful job with my son. I just wish I could have the confidence, the skills that they do; at times I feel so inadequate as his mother/caretaker.
I wouldn't wish none of this on my own worst enemy, but it would make people realize just what I am going through on a daily basis. Raising a son like mine is not for the faint of heart, and there are days where I don't wish he would be able to walk, talk, see, hear, do things for himself instead of lying there, like a lump of flesh.
I sometimes get mad at God for allowing this to happen. What did we ever do to deserve such a sick little boy to raise? Why couldn't he have been born like his older siblings?? Why does he have to suffer so needlessly while his sister and brother can pretty much do as they please, with no worries? Why was he born with this awful disease that most people never even heard of??
Who was responsible for carrying this gene that was eventually passed on to me, and caused me to have a sick child? I'd like to find that person and wring his or her fool neck for destroying my child, my life!
Well, the doctor wants to talk to me again, so I'll go. Hopefully it will continue to be good news; I'm more than tired of all this heartbreak!!
I will write in here again soon; hopefully by then Ethan will be back home, where he belongs, and we can get back to a (somewhat normal) life!
~Judy Reichart, Ethan Raymond's mom (also mom to Erich and Missi). :(