we checked in at 6:45pm at Texas Childrens Hospital 21st floor..little did I know what we had in store! I knew these things were difficult, in fact the ENT told me, "most parents do it once and never again despite the recommendations for a study annually after age 1." I've had friends that had babies with apnea and they said it was miserable, even a fellow Warrior mom had one done last month on her son a few months younger than Parker...guess what they say is true "ignorance is bliss.."
At 7:10 we started the process of "hooking him up" with wires and sensors to the extent I have never seen before! 25 on his head alone!! To say this was a difficult task would be an understatement. He cried, angrily screamed, sobbed, to the point of exhaustion, catching breath, you name it for 1.5 hours. The tech kept telling me "not to let anything touch the wires" come on, the poor kid was desperate to be held close in a hug by his Mom. Or, better yet, get down and run around! She had to remark his head with greasy red wax crayon at least three times. She tried to find reinforcements, but that tech was "having trouble of her own," so we went at it one more time. I can promise you I was not leaving without a fight although the tech almost had me convinced it wasn't going to work. So, we "papoosed" him (nice way of saying tie up all arms and legs in a sheet) and we toughed it out. This was after she put shunts on both arms (like velcro casts with sticks) to keep him from pulling wires off. By God's grace we pulled it off and he was "wired." Don't let the pictures fool you, he may be smiling in them, but he was fit to be tied. He got about 10 minutes of play before we started while I brushed my teeth for the night.
Parker fell asleep quickly (not surprised) and he had 3 easy hours of sleep until midnight when he pulled the tubes in his nose out. So, we then spent the next hour getting those back in. He was trying to sleep through it all, but we had to wake him and crying commenced again. After three tries we finally prevailed and some "super sticky tape" was taped over what you see on pics. Asleep again...ahhh..then at 3, 4 and 5, the machine that read the nose wires (CO2) kept stopping so wires had to be replaced. Parker slept through this fortunately.
At 6am, we were told "test is complete!" "Gee, how rested I feel!" LOL, Then came the "cleanup" of stickie tape which I'm still working on this pm.
So, the tech asked me several questions (part of the study): 1) did he sleep here like at home? ME:Ah, NO, we never wake up at night nor have intentional torture before sleeping... 2) how long do you think it took him to fall asleep? ME:5 minutes SHE:Something like that she says, it was really fast..not surprised, he is easy to put done to bed, but after all that emotion it probably wouldn't have taken a minute! 3) how many hours do you think he slept? ME:6.5, SHE: no, more than that. ME: well, test was 8 hours, minus 1 hour in middle of night, and other "issues" maybe he did sleep more, but....
we will get results in 72 hours, but what she did say was his REM was impressive, I tried to get %, but she hadn't figured that out yet. She wanted to know what we were doing differently.
So, do I recommend the study? Well, I do, but be prepared. I will also wait to see what results say to make my final opinion. We don't suspect apnea and if test confirms that he does not have apnea, I might be inclined to "trust my gut" and pass on that annual study. Problem I see potentially with our study is Parker was so upset, his nose ended up getting stuffy, so is that a good time to take the test? How do they measure all that stress in the results?
And, to top all of this off, I learned they watch you all night! Creepy for me, big balls on ceiling with cameras. Needless to say if they had studied my sleep they would have known I wasn't sleeping a wink!
Gotta love this precious boy, smiles even in the midst of tortune..Papa Smurf look out!! "gee MOM, why can't I bend my arms, waving and playing is hard with these things on!"
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.Jeremiah 29:11 Our unexpected journey with Down syndrome, babies with heart conditions, T21, and AVSD.
Lara, 40 year old wife to Michael (married 17 years, best years of my life)! Mom to 4 wonderful kids! Taylor, 11, Mallory, 8, Madeline, 6, and Parker born 5/23/09. We found out after delivery Parker has Down syndrome and a complete AVSD. He was scheduled to have open heart surgery at 4-6months, but God intervened! His surgery was postponed until July 2010 and God healed his VSD hole in the process. So, on July 20, 2010, Parker had open heart surgery to repair his transitional AV canal defect. He was in ICU for less than 24hours and home in 72 hours. We never looked back! I own an Executive Search Firm focused on Accounting/Financial placement (used to work in Big 4). Actively involved in my kids activites and school; all are competitive swimmers and son Taylor plays tournament baseball. Girls do tumbling as well. Avid runner and boot camp fanatic. Used to be a competitive figure skater growing up. LOVE to shop, ebay/etsy crazed, addicted to Starbucks non-fat lattes, a child of the KING, thankful that we are saved by faith and grace!