|
October 9, 2006
Chaz did some homework and talked to about everybody he knows today. And some more
than once.
Guess he's feeling a lot better. Had to give him a bath on the bed, with the help of
his dad and his attendant.
He, (as well as I and my husband) are a little disappointed in the family. Both sides.
Some live here. Other's have working phones. But, no one is checking up on him.
I think he's going to be just fine! Thank God!
October 8, 2006
Chaz was up and well for the Redskins game today. I could have told him who would win.
He didn't have to stretch out in the recliner to see such a disappointment. They was automatically coming. Any
time someones play the Redskins, they are bound to win.
Chaz worked on his homework today. He has a pre-op appointment for November.
Now I'm trying to get the homebound schooling sheets that were given to his Doctor (the ones I didn't see.)
He's still not up for pix yet.
October 7, 2006
Lord, Have Mercy
That title seemed fitting for today. Or at least I think it’s a day, for the next
20 minutes anyway.
Last night, I slept. Not the kind of sleep that restores the body. It was more like
rest. Then my husband calls at 7:50 a.m., to tell me that Chaz is ready to go home.
So, me and Dustin (age 11), both half asleep, did our best in packing. I’ve been
waiting for the hotel to call all day and tell me we left something important.
Last night they put a child in the room with Chaz. A child that had spent ALL day in
the ER to only be transferred to my son’s room 12 hours later. This kid has something respiratory going on. They think
its pneumonia and/or asthma. But, they have no clue. So, they stick him in a room where a “healthy” child is suppose
to go home. I didn’t understand why we didn’t go last night. After all, Chaz would have slept better.
Driving home was like a bad joke. The rain was so bad, us normal people (the ones that
want to live for one more day) were driving around 40 mph with our flashers going.
Chaz got home around lunch time. We still had to fight with him to take medicine. But,
he did talk to some relatives. He’s still in control of the remote (for the TV, air conditioner, light, fan, etc. Around
here, that’s a guy thing.
I think Chaz is going to be fine. I think Frank needs to see his ortho doc because he’s
been lifting too much. Dustin needs to see a ortho doc as well as a psychiatrist after this trip (because hanging out with
2 sleep deprived parents for a week will mess up any kid.)
It’s funny, but we met some really nice people. (No, they were not relatives.)
We understand that everyone’s life goes on. But, you’d think for one little minute (60 seconds) a grandmother,
a grandfather, an aunt, an uncle, a cousin, someone would call and say, “Hey! How’s it going?” Unfortunately,
that only happens in the movies. Guess that’s why I just watched the new version of, “When a Stranger Calls.”
Strangers actually interact with you. They care. Even if it’s only for 60 seconds.
October 5/6, 2006
How do I put this?
Chaz is sharing a room, with a little boy that had 2 surgeries. One of the belly button and one for his
cleft palate (forgive the spelling, I'm not sleeping.) The grandma was really nice (she has custody of him.)
Chaz woke up about every 2-4 hours (not quite sure, lost track of time) and I'd rearrange him (per his request.)
I'm beg him to take pain medicine. He would yell, "just let me sleep."
My dad left Thursday morning (before me and Dustin got back from the hotel and here it is 9:41 p.m. on Friday
and we haven't heard ANYTHING from him!) Go figure. I know you all thought I was making this up. Like the
front of the C'Ville says, "Even John Grisham couldn't make this up." Who knew he lived in Charlottesville? I
didn't. Of course, I have never read one of his books. Now, I might just have too.
So, I spent from lunch time Thursday till lunch time today with Chaz. At 6 this morning, I finally overruled
him and made him take pain meds. He paid me back by throwing up the pain med and the colace 4 hours later. He
loudly let the hospital employees know that he was made at me for making him take the medicine.
So, while I cleaned up the mess. Changed the bed. Chaz went and played basketball. Yes, basketball.
So, his dad looked like a hero and I looked like the evil wicked witch.
I finally had to take a nap. So, I went back to the hotel and slept hard for 5 hours. While, Chaz
made a 360 degree turn and was granted permission by the good old doc himself to go home tomorrow.
My husband had been complaining all week about us seeing the interns and not the actual doc. I had to agree
with him. But, then again, I try not to make major decisions under these circumstances.
Chaz is NOW doing great! He will go home tomorrow. He has a long road a head of him and we need all
prayers! Hopefully, he'll let me take some photos. He's refused all week. And since this week was about
him (after all it was his surgery,) then he made all of the medical decisions. He's really growing up!
October ??, 2006
This is day 3 of Chaz's spinal fusion surgery at UVA. He's been on Morphine, so he's doing just fine. Knock on
wood he hasn't complained about back pain at all. His legs hurt. Which is bad. My husband had to same surgery this June and
well, his legs hurt and still are, because they hit his sciatic nerve with a pin. <p>
Chaz went from the PICU to the (I honestly can't remember.) Let's just say, it's a step down from the PICU. <p>
The nurse woke me up around 3:30 a.m. to get Chaz to take some liquid tylenol. I could have killed her. She said
he wouldn't cooperate. But, he did. So, down to the cafeteria I went for fruit, donuts and soft drinks. Of which Chaz drink
about 1 ounce. <p>
Then around 4:30 a.m. the docs came in to change Chaz's bandages and have the nurses to remove most of the equipment
that was hooked up to him. Of course, I woke to hearing them talk about me snoring. They said they thought it was FUNNY. I
was going to pretend like I was asleep, until I heard Dr. Abel outside of the room. I jumped up and ran out to catch him before
he left without answering some questions. <p>
Keep in mind, I haven't had much sleep, so my vocabulary pretty much was non-existent. I had him explain to me
why the equipment he put in looked like a upside down "J' (also known as a fish hook or a candy cane.) He politely drew me
a picture on a napkin, and explained in parent language. <p>
I was told by the nurses around 9:30 a.m. that they would try to get Chaz into a room later. My husband showed
up with our son, Dustin and so I got to go bet some breakfast. Of course, it was lunch time by this hour. <p>
So, as I went back upstairs, I found out my son was moved to a room. With a soon up and coming roommate. I fussed.
I was paying out of pocket for a private room. I WANTED my private room. <p>
The bed they gave him was wrong. The fluff linen was not delivery. The boots for his feet were not delivered. Etc.,
Etc., Etc. So, I was furious. I took 2 Xanax then called everyone at UVA that I could get my hands on. <p>
Meanwhile, Chaz slept. And kept asking for sleep. It's 5:30 p.m. now. My dad has been with him since 12. When I
get back, I'll let you know how he's doing. It has to be better than me. Because I locked my medicine box. And the key was
lost during the room change. So, I had to break it open with my shoe. Thus, falling, hitting my head on the sink, and falling
onto the floor and getting a rug burn. Now, maybe I can find food. Oh, Happy Day!
(I know that I'm updating this pre-written blog on October 6, 2006. But, I either fell asleep, didn't have
time, or who knows.)
October 4, 2006
It's now 9:35 p.m. and we just left the hospital. Chaz is still there with my dad, who will be spending
the night with him. These dummies put Chaz's new IV into his left hand. (You should have seen us trying
to get the hospital personnel to understand that Chaz doesn't use his right hand (much) because of the stroke at 6 days of
age.
I finally had to say, aloud, "I have no tolerance for stupidity!" So, I made some more calls, yelled some
more. Finally my family insisted I take a Xanax "to chill out."
I did. Then my husband went off. About the same things that I was. IV in the wrong arm.
Taking Chaz off of Morphine in exchange for Tylenol and Motrin. (Not to bright if you ask me.) I mean, I have
to take Vicodin and/or Tylox for a Migrane. I'm pretty sure having your back ripped open from neck to butt cheeks hurts.
Especially when your spine is rearranged from a backward "S" to straight line.
Then again, hospital people are not always "parent/child friendly peaceful." I really wanted to write down
the "rights and responsibilities" section of the UVA adminission book. But, I've decided to make that a whole separate
page.
Chaz still refuses to take a picture or do a video. All he wants to do is sleep. For those of you
that want the real info. Here's how it goes: the only thing holding Chaz back from being discharged is "a bowel
movement." Without one, he can't be discharged. Tomorrow morning I'm going to find someone walking a dog and ask
if I can help them pick up the void. After all, poop is poop! If you would like to contact Chaz he is at 434-982-2407
(calls can be accepted between 8 am and 8 pm only.)
Chaz finally ate some jello and spagetti (for his Papa) and some Mountain Dew. At least he is eating for
someone.
October 3, 2006
I spent fom 1 a.m. to, whenever at this point. Basically all he has done is sleep. His feet hurt.
They put duroderm on his heels. But, he's still complainng. I asked him several times how he felt. Everytime,
he said, "my back feels fine, now leave alone so I can go to sleep.
Supposedly my dad will be here for night duty. That would help a lot.
The PT adjusted his wheelchair (the best he could - I pray it works.)
Now, I have to order a bed (that does more than it does now. This will will actually move the whole bed
up. This way Frank and I won't have to break our backs during transfes and Chaz won't be in a lot of pain.
Right now the big thing on eveyone's mind is the dogs. One of them already had a stroke, due to separation
anxiety. I pray she makes it through this week.
The doctor showed the x-ray last night. Chaz's is straigther. But, will all the elemets they had
to wok with, Chaz has a"j" shaped rod in his back. My question is, will this work? What abut homebound schooling?
And a lot more questions.
I'll speak with you late. After all it's onl 4 a.m.
October 2, 2006
Bet you never thought I would blog today, did you?
Truth is, I'm over computers. Mine refuses to work here at UVA. So, I'm using theirs. CHKD
needs something like this.
Frank said that Chaz slept good last night. He's had quite a few bags of plasma. If someone could
look that up for me and let me know what that is, I'd appreciate it.
Chaz is still in the PICU (it's 4 p.m.) by the way. I hope to sent pictures later. Right now, all
Chaz wants to do is sleep. I wish I could. I did fall asleep watching Gene Simmons show last night.
But, back to Chaz. He got out of school again today. They tried yesterday (yeah, I know, too quick.)
They tried today, Chaz said go away and le me sleep. So, tomorrow, we will try again.
The social worker came by to see if she could help with anything we have going on and after I told her who I
was and gave her all my sites. She asked if she could pass it on to other parents (of course I said yes.)
It's funny though when people think of me as "quiet and shy." I lost those years after I had Chaz.
For the record, Chaz looks good. His rash went away. His fever is so-so. He has...oh, I hate
to even say this...because I'll be jinxing myself...but...Chaz has...no...yes, I said no...back pain. Even when sitting
up. His back is not as straight as my husband and I thought or hoped. But, we also haven't see Dr. Abel since
yesterday morning around 7 a.m. So, I'll be sure to ask lots of questions.
The PT came in and made lots of adjustments on his power wheelchair (so he can get in it.) The PT said
he was surprised that Chaz wasn't in worst shape or worst pain because of the way the sitting was designed on the power chair.
Of course, I silently agreed with him. After all my husband and I have had that agrument hundreds of times. (I
blame the manual wheelchair on his back too.) But, when you have a kid with cerebral palsy, that also underwent a rhizotomy,
you're going to have problems. So, there's no real finger pointing here.
Well, if I get a chance, I'll let you know how Chaz is doing. Thanks for keeping in touch!
October 1, 2006
We went to Chaz's favorite restaurant to eat (Kings Island, in Lynchburg, VA.) We met
a really nice couple, that, when they got ready to leave, handed me a $50 bill for Chaz. The wife whispered in my ear,
"we know how you feel." I asked how. She said, "our son died of a heart-attack at age 12." This was needless
to say, very sad. Yet, it showed me that not everyone in the world cares only for themselves.
Chaz visited my grandmother. Two aunts. And needless to say, my mom and dad.
Yes, that's correct. What got into them? Who the hell knows?
Dustin (Chaz's brother) is going insane. He is doing some really dumb things to get
attention. As much as it might seem that he's jealous of his brother, the truth is, this is how he acts when he's nervous.
For example, there's a song that says, "I'm the kind of person that laughs at a funeral." That's Dustin and of course,
me.
On Saturday my sister-in-law had a party/cookout for Chaz. He had a ball.
Déjà vu (September 30, 2006)
(Or how I like to call it, “here we go again.”)
Here we go again. Last weekend, most of you read about
my dear old day (he’s not that old, yet.) He couldn’t drive 15 minutes
to visit his grandson (that has special needs, if you’ve been keeping up.) <p>
My so-called mother wouldn’t come see her grandson, for nothing!
Not even if he could walk on water. Hint:
(remember this is where she confesses to being a “Christian.”) Maybe
this is why a lot of people don’t go to church. Backstabbers, judgers and
such.
<p>
Anyway, we left about an hour ago. My son, called my dad,
his Papa, to see if he would come over to my sister-in-laws house for a cookout/hope things go could on your surgery. (A 20 minute drive max for my dad.) He
said, you guessed it, “no.” <p>
So, my son told him that we would be eating Chinese food tomorrow.
There’s only one place that we do that in Lynchburg. He said, “I
don’t really like that Chinese food.” (Funny, not to long ago he
told us that him and my mom eat there.) Again, here’s another 15 minute
drive. The answer was, “no.”
You people that guessing the answers, are really good at this game. <p>
Well, then my son asked if my mom, he calls her “grandmom,” would come see him. Before he could finish the question, my dad said, “you know she’s not going to.” <p>
So, I wanted to scream at them both. Especially him (he
has moments of guilt.) My mother I don’t even think is human, as cold as
she is. <p>
The reason I didn’t say anything (even though it bothers me is because) I watched,
“Madea Goes to Jail,” for like the 15th time. And there’s
one moment, when she tells Sonny, “if someone doesn’t want to be in your life, then let them go. Just let them go. Don’t let them mess up life for you.” So, thanks to Madea and of course, Tyler Perry, I am letting my parents go. I will not try to reach their hearts anymore. I give up. They win (wait, I swear I just heard the devil cheer.)
<p>
Anyway, today begins a 10-day of adventure of (In-laws; a 10 year old that’s worried about his
brother, but trying not to show it; a husband that is y and refuses to take Xanax for it; grandparents that could care less;
visiting my grandmother; and watching my poor 13-year-old son be put to sleep (for surgery); praying that an orthopedic surgeon
and a neurosurgeon don’t paralyze my son; and praying that the anesthesiologist doesn’t go too far or too short;
and the main thing is to make sure I stay sane and don’t flip out on people that aggravate (and we all know that someone
will, eventually!)
The beginning of the end!
|
