*****MJ and Brenda posted the video they made of the
SMA Candle Lighting. The collage I made of the boys is in it. Thank you, girls!!
It was an okay morning. Boys slept okay. Nurse Julie was here. Nancy H is on vacation.
Priscilla (Colin's para-educator) came to visit for a bit.
Gene got picked up by his dad so they could get Grampa's car from the car guy and then he went to work.
It was this afternoon that all heck broke out. And, I really don't mean it. Everything was fine but I got grumpy. Nurse Julie played hours and hours of wii with Colin--Destroy All Humans. Aunt Chris came later and brought the boys the new Muppet movie, "Muppets Most Wanted" so we watched that. Lots of ows, and demands from the boys. Casey: Mom move leg. Mom eye hurts. Ipod now. Beatles. Paul McCartney. Queen. Dog barks because he thinks its time for dinner. Cat wants food. Casey looses thumb to control DynaVox--takes forever to reposition. AC moves said finger with blanket. Colin wants to move to his back. To his side. Take out ear pillow. I mean, I am grateful that they can tell me (either by DynaVox, yes/no questions, barks, etc.) what they may need but they are demanding. And, of course, I can only try to imagine what it would be like to have to rely on others to help me move every single body part. I grumble anyway, and then I feel guilty for grumbling. Welcome to my world, lol.
And it's muggy. Not crazy muggy but enough to contribute to my pissiness, and yes, that is a word in my book.
Gene is home now. Earlier today he made kale soup with sausage, white beans, tomatoes, etc and that's what's for dinner--a little weird on a warm night but somehow it's become tradition for him to make it during the summer. Oh, and he bought some crusty bread, yum.
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Random post from the past:
Well,
here’s a Colin story. Thursdays, I have no nurse. No big deal, we do
fine. Colin had his school from 9-11:30. He watched a movie afterwards
and then wanted to flip. I had him on Casey’s bed in the Wish Room.
He was on bipap for his afternoon break. The bipap tubing was on a
table near his head and his feeding tube and sat monitor were hooked up
towards his feet. I can’t even explain what happened. I put him on his
bed, in the same direction and was getting ready to flip him but his
tubing and cords weren’t slack enough. I turned to try to pull the IV
pole closer and I don’t know what happened. Somehow, I must have pulled
on his feeding tube and O2 lead and I PULLED HIM OFF OF THE BED ONTO
OUR VINYL FLOORING (CEMENT UNDERNEATH)!! I had my back to him fighting
with the pole when I heard a sickening thud. He immediately cried and I
just went and scooped him up. It was awful seeing him lying there in
sprawled out with no way to right himself. AWFUL. He cried, and his
heart rate went pretty high. I immediately started crying, which made
him more frightened. I didn’t know what to do. I finally found one of
our phone handsets and the darn thing wouldn’t dial out. I had to leave
him and go into the other room to unplug and replug it in. It’s done
that before. I tried calling Gene’s cell, but it went to voice mail. I
tried calling his office number—same thing. I called Grandma O’Neil
and it took her a minute to figure out who I was because I was bawling
so bad. She told me to call 911. I called them and explained what
happened and we got hooked up to our local guys. They dispatched
someone. Colin was still on bipap and looked fine. Sats were 100% and
heart rate only in the 130s. I don’t know how long it took 911 to come.
I called Karen Reilly and she calmed me down. A cop came first, then
Gene called—him mom had reached him. The EMTs came. They checked him
out a bit. No blood, no marks, he was acting fine. I decided to call
our primary doc. They were out to lunch!! I called the direct number
and the answering machine came on! GRRR! I called Children’s Specialty
Center, explained quickly, asked for our pulmonoligist’s nurse, (I know
it wasn’t respiratory related, but he’s at our local hospital and I
really like him and trust him). I got her on the phone in less than 30
seconds. She said we should bring him in. Gene got here from Essex
Junction in record time. He must have driven way over 80 miles an hour!
He was shaking when he got here but totally had everything under
control, getting Colin’s things on the stretcher, etc. We got all his
stuff on the stretcher (with the battery and all) and I went with Colin
in the ambulance to the hospital while Gene took our van down. We got
right in. The ER nurse brought him a TV right away and we found the
Muppets Classic Theater which he’s never seen (note to self—look for
this on DVD) and he was quite happy. Our pulmonologist, Intensivist,
and the resident came right in. They checked out his arms, legs, eyes,
head, etc. There was nothing obvious wrong. But, they wanted to be
safe so they ordered some x-rays of his chest area and arms/wrists, and a
CAT scan of his head. We did that right away, too. They saw nothing
at all—no bleeds, no swelling. Of course, some bleeds could show up
later, so we have to watch him to make sure he’s acting normally. So,
the resident called our primary to let him know and he’ll check in with
us tomorrow. Then, we were discharged. This happened right around
12:45 and we got to the hospital, had all that done, and were home by
3:35—not bad.
I feel awful. It’s always been a nightmare of
mine for something like this to happen. Very scary to have to have it
come true. But, I think he’ll be fine. He’s been off bipap since we
came home and is acting perfectly normal. Thank God.
- Current Mood:
drained
