SAL-VA-TION: by grace

E-LEV-EN: children from 1984 to 2006

HOME-SCHOOL-ING: since 1990

DOWN-SYN-DROME: susie and gabe

GRAND-CHILD-REN: since 2010

FAITH-FUL-NESS: my steadfast rock, my biggest supporter, my leader, my friend, my love, my husband

Wednesday, May 23, 2012

Gabe update

(I don't know how this looks to you, but it isn't showing any paragraph breaks on my screen--I put them in, so I'm sorry if this looks like one big paragraph!) I have tried to post a few different things in the past weeks, but I can't get onto the "post" page on my home computer. I have a few minutes at the library and want to give an update on Gabe. About 8 weeks ago Gabe had surgery to remove his adenoids. He's been struggling with sleep apnea and breathing problems at night and this was the next step in trying to correct the problem. Gabe and I drove down to Madison on Thursday night for, what I presumed was, a Friday morning surgery. The surgical department was supposed to call me on Thursday to give me the time. I gave them my cell number and told them to only call that phone as I would have to leave fairly early in the afternoon to go to a baseball game along the way and then get checked into the Ronald McDonald House. I had a lot of coordinating to do. Shane had the baseball game and was driving to Madison with me, but then had to get down to Milwaukee for a basketball tournament. Troy was to meet us in Madison (with a car we'd let him take to load up end-of-the year college stuff) and get Shane to Milwaukee. I didn't get a surgery call all day (turns out we had 4 messages on the home phone), called the hospital twice, and finally got a call back from the surgeon's night staff telling me we had a 4 pm surgery. No matter what time of day the surgery is scheduled, the patient can't eat any solid foods after midnight. That was going to be tricky. Gabe doesn't do well with hunger. When he hits his hunger wall he loses it. I don't know if hunger affects him differently than most kids or if he just doesn't know how to deal with it. He can go quite awhile without eating but then comes that wall, and often without warning. I was afraid of a day of fasting. I kept Gabe up until almost midnight and got him to eat at least 2 meals worth of food between 10:15 and 11:00. Thankfully, the Ronald McDonald kitchen was well-stocked and I let him eat anything and everything he wanted. Unfortunately, the late night did not produce a late morning and at 7:00 we headed to game room to play. I kept distracting him when he'd ask for food and we made it to 9:30 without a hitch. We then headed to what turned out to be our 'salvation'--the zoo! Gabe was so enamored with the zoo and the animals and the flowers and the merry-go-round and the train that he never once asked for food. I experienced another "Gabe is growing up" moment at the zoo. He was playing in a playground area and I couldn't see him in the treehouse slide. I walked around the back side to get a better look (later figuring out this was when he slipped out the gate back into the zoo). I watched awhile and then asked a girl to climb up into the top and look for him. No Gabe. I figure he'd been missing for about 10 minutes and had no idea how to find him. I headed for the ticket booth of the merry-go-round and was directed to the ride operator to report a lost child. As I walked around the operator station Gabe came running through the gate and almost ran into me. He had gone to the merry-go-round, gotten on (we got all day wrist band passes), and taken a ride! I told him that it was OK to go anywhere he wanted, that this was his day of fun, but I didn't want to lose him and he had to tell me when he wanted to leave. For the rest of the day he never left an animal, exhibit or area without first coming and holding my hand!!! When we got into the car to head to the hospital he fell fast asleep and didn't wake up until I changed him into his gown just before heading into surgery. (The downside of that was that I had to carry him AND all of our bags down the street and to the surgery area.) Surgery went well and Gabe was alert and READY for food by 7:00. The night was rather uneventful (except that Gabe did not want to sleep there so I didn't sleep much either) and we were given preliminary discharge at 7:30 am! We were gone by 9:30 and headed...back to the zoo. As far as Gabe was concerned we'd taken a weekend trip to the zoo with an inconvenient 18 hour stop at the hospital! The first 3 weeks after surgery were terrible. Gabe felt fine and had no recovery issues at all, but the swelling kept him snoring and/or not breathing (and therefore from sleeping) no matter what position he was in. We all had a rough 3 weeks with very little sleep and a lot of trying to figure out how to help him. The swelling decreased enough after 3 weeks that he could sleep well if he was on his stomach or side and for the last week he hasn't gotten up in the middle of the night at all. We were told we won't know the full story on how his breathing is affected until June or July, but there seems to be a definite improvement at this point. I guess this past year has been make-up for him sleeping through the night his entire infancy. Gabe hit another medical milestone this week that has nothing to do with sleep. He made it through a dental teeth cleaning! I never would have guessed that having a child with Downs would have meant having difficulty at the dentist. But, I've read the reports from others and have seen Gabe refuse to open his mouth for the hygenist. The first time Gabe went to the dentist he just sat in the chair, got a ride up and down, and opened his mouth long enough to let them peek in. That was it. Last year we got a step further and Gabe allowed them to put the little mirror in his mouth and count his teeth. I had visions of having to sedate him just for a cleaning. I took him in this week and gave them the routine that we use to brush his teeth--tell him to open and then count to ten while I brush. At 'ten' he gets to stop, swallow, and open his mouth when he's ready to continue. This helps him feel like he has control of what's happening and he knows there is an end. Well, it worked! We got all 21 teeth cleaned. I think we had to count to ten about ten times but he didn't resist or try to get down. There was one incident that cracked up the hygenist so much it took her awhile to regain composure to go on. Gabe was only managing to count to five on the upper teeth (greater sensitivy on the upper palate). That happens, too, when we brush and I just continue with 6, 7, 8... when he's ready. Instead, Deb said, "We'll start over," and again only got to five. Gabe closed his mouth, looked up at her and said, "Six, seven, eight, nine, ten!"

1 comment:

Becca said...

Yep, all one paragraph. LOL

Wow, what a roller coaster of a zoo visit that was!! Terrifying to have lost him! I get so scared when I can't see Sammi at the playground, too.

About the dentist - this gives me great hope. Samantha also used to completely refuse to even open her mouth. But the last time she went, she let him count her teeth. I'm very, very hopeful we can get a cleaning in there one of these days... Great job, Gabe!!