GOT STUFF TO DO, WELL, MAYBE NEXT WEEK. Can't I just wait until the next time the roses bloom?
This morning was bad. Not sure if it was something wrong with me.. you know I am 44 and suppose to be getting close to the "M" word but most of the time I feel justified in my mood swings even thought I don't have any symptoms of "M".. I don't even know if that was ME saying that or if it's because of "M". Whatever...
What was the very first thing that happens when I open my eyes this morning? Matthew has rolled to the edge of his bed with his head pressed again the side rail. The bumper pad has fallen onto the floor. Not only is he on his side, he's vomiting and choking on his vomit because of the position he is in. If I had not woken up, I am positive he would have choked to death. He was just fine yesterday. Has been just fine for the last 4 months. It's like one minute, everything is in control. I do what I can to keep him healthy but then the next second, he's sick and my world is turned upside down. I have no control whatsoever. He can't roll over so how the heck did he get on his LEFT side?? HE NEVER rolls to the left. Did he have a siezure that put him on that side? I will never know now but I know I will be moving his bed closer to mine.
Sometimes he will be sitting in his chair just fine, the next minute he's choking on his own drool. To the point that he get the red spots on his face and neck. I run for the suction machine and by the time I get back with it, he's already choked to the point that he is wheezing from aspiration. This doesn't happen once a day, once a week, once a month.. I never know.
So I suction him out this morning and get the breathing machine to help him get some oxygen into his lungs. Take off his wet shirt and see that he has clawed himself on the top-front of his shoulders. He had his arms pulled in really tight when he was choking so I think he clawed himself then.
He feels feverish so I take his fever and it's up but not a lot. I run his bathwater while he is recovering from the choking episode.
While his bathwater is running, I fix his morning meds. Phenobarbitol for seizures, Robinul for his excessive drooling, Depakote for siezures, Baclofen for tight muscles, Keppra for seizures, Levocarnitine to help his liver stay healthly from all the seizure meds and tylenol or motrin for his hips that are both out of the socket after already having a surgery to put them back in a few years ago.
He's in pain because of the hips in the morning. The ball joints are rubbing on his hip sockets every single time he is moved.
Finally the bath water is ready. I have to pick him up and put him into the whirlpool in his bath seat. Pry his hands apart to get the straps around him.
I get in with him most of the time and give him his meds, peptamin JR. (formular) and water through his tube and while he's doing this, he is getting another breathing treatment.
After he's washed up. I get to clean myself. He sits in the tub and relaxes while I get out and get my robe on.
I have to pick him up from the seat and put him in his bed about 5 steps away. I usually warm up some towels in the dryer because he hates to be the least bit cold when he gets out. I try to get him dressed without hurting his hips but I usually end up getting a gasp or whimper because I have no other way to get a diaper on him without moving him. I have to used powder and I have to try between his toes, fingers; all his little cracks or he gets fungi, like athletes foot. If he has not pottied, I have to give a babylax and wait until he does his business, and clean him up again. He has constipation problems and he will not "go" until "after" he's eaten and taken a bath.
Its very hard getting his shirts on because his arms are so tight.. I feel like I am pulling and pulling and by the time I am finished getting him dressed, I am exhausted. We have an appt in Sept. to discuss getting a baclofen pump but that's not going to keep the ball joints on his legs from rubbing on his hip joints. How am I suppose to let him go to school and trust that those people will be as careful as I am when they change his diaper? I'm not!
After he's dressed I pick him up and put him in his chair. My that time I can feel a tingling in my lower back.. Not a good tingling. If I touch my back when it's tingling, I can't feel the spot I am touching. It goes numb. I'm praying that feeling does not travel to my hips or legs or we are in trouble.
So now he gets his hair combed, teeth brushed, and then It's finally my turn. By this time, my hair has tried wet and looks awful so I have to dampen it, blowdry it out again. I don't even know why I bother putting makeup on here lately. We hardly go anywhere and I don't have to worry about anyone coming over here...... for some reason... I guess they think I might ask for help or they feel guilty for not offering? Who knows. People are strange.
Anyway That's the first 3 hours of my morning. I have not had coffee, or even had time to go to the bathroom. I think I am too tired now to get to the afternoon routine so I'll save it for later.
I was not in a "bad" mood, I would call it a frustrated or defeated mood. I always feel that way when Matthew gets sick and I can't do anything about it. It's like I am mad at myself..
After things settled down, I check my email and social networking sites. (The WWW social networking sites like Facebook, MySpace and Yahoo groups the only social life I have besides taking the online classes and having chats with my classmates. Because I can't get out and go and I don't have a relief caretaker for Matthew for anykind of life outside of my house) Anyway, I am finally drinking coffee, frustrated but my nerves are finally settling down....
I had posted on my facebook, myspace, and emailed my friends in my address book a few weeks ago asking them to send me some recipes for a cookbook fundraiser project. I don't "want" but NEED to have someone come out and build a platform to lift Matthew's whirlpool so I can get him in and out using his LIFT so My husband and I don't break our backs, pull a muscle or worst case, fall and drop Matthew.. But anyway..Out of a total of approximately 500 contacts, I got recipes from 3 people. I only had 5 weeks to work on the book, 3 weeks had passed by, so after all my fiasco this morning, my status on facebook reads Charlotte says"Fundraiser cancelled". If I can't get but 3 people to send me recipes, I'm pretty sure I won't be able to sell any cookbooks."
I have asked about 6 times for recipes.
Was I wrong to post that? I can see that most all of my contacts have taken many of the those facebook/myspace quizzes, post "junk" other people's walls. Send those stupid "facebook" drinks back and forth, play games, forward me tons and tons of junk email but no one has the time to copy and past ONE recipe?? My feathers are ruffled again.. Must be that "M" again.
How many times have I seen posts of people asking for prayer or reaching out for help and not receive any comments or words of consolation? Breath people, breath. lol Some of my contacts have over 200 friends but I sit and watch them get NO responses when they say, I am having major surgery today, or My dad just died.. they might get a few comments but why not at least Half send consoling comments? But the friends are too busy using the social networking applications and not interested in communication so what's the point? Did the definition of a "friend" change since I've been out of the pocket, taking care of Matthew?
I wonder who made up that saying "Stop and smell the roses."? That quote has been around a long, long, time. I wonder what that person would say now if he had to make up another saying for today's world? If you can't remember the last time you have helped someone, called someone just to talk, or did anything for anyone, then you have something to think about.
I hope I don't offend anyone. If I did, please just ignore these words and brush it off to the "M" word or just call me crazy. If you delete me from your contacts or friends, I wont be upset and promise not to try to add you back.
Posted by Charlotte at 4:22 PM Links to this post
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