Wednesday, August 29, 2012

Twisting, Tossing, and Turning

We survived Selah’s sleep study last night, but not without tears, twisting, tossing, turning, wrestling, head banging, kicking, screaming, biting, and lots and lots of patience on behalf of the sleep technician!


I decided very last minute to take our 14-year-old daughter, Mattie, with us to the appointment.  While the paperwork stated that only one guardian would be allowed to stay with the patient, I simply could not imagine even traveling to Dell Children’s Hospital with Selah and me alone in the vehicle.  I wouldn’t be able to tend to her needs (and she is VERY high need—all the time!), I wouldn’t be able to make sure she stayed awake, I wouldn’t be able to pacify her with the iPad, food, sippy cup, etc.  She needed to eat her dinner while traveling—there were just too many logistics for one driver to take care of.  Mattie was eager to attend and help, and after three phone calls to three different numbers/persons associated with the sleep lab to beg permission, with no response, I decided to take the “ask forgiveness than permission” approach.


And, let me tell, you EVERYONE was glad we did!!! 


Selah needed Mattie’s assistance while traveling, I needed Mattie’s assistance to get Selah and our stuff into the hospital (we happened to be in the middle of a parking lot domestic dispute that led to the infamous hospital “code grey”, which required security. 


As soon as we got through registration (which Selah banged her head throughout), even with Mattie being present, we strolled down to the sleep lab, where things are supposed to be quiet and serene so as to not interrupt other sleep study patients.  Well, Selah didn’t quite understand that rule.  She promptly started tearing the room apart, trying to climb all of the furniture in order to rip things off the walls, all while squealing and screaming and jumping and throwing fits—with TWO of us present trying to calm and corral her.  If I were a first-time mom, I would have been mortified by what the technician was thinking.  Thankfully, once you’ve had 11 kids, many with special needs, you no longer are concerned with what others think. :-)  (I did share a little of Selah’s miracle story later with the technician, not that her story would necessarily change any judgment upon me as a mom, but it would give God glory that Selah is even able to walk, run, jump, climb, talk, squeal, scream, and destroy a room!)


After 30 minutes of terrorizing the room and disturbing everyone within 50 feet of our room, Selah climbed into the suitcase and shouted, “Bye-bye?!?!”  It was a question and a declaration.  She got so upset when we didn’t leave—she simply couldn’t understand why we were in this tiny little room with nothing to do but sleep, which isn’t Selah’s favorite activity, nor does she excel at

The sleep technician told us to go ahead and give Selah her variety of sleep medications.  Her advice was to get Selah to sleep, then she would put all of the leads on her since she knew she’d pull them all off if the tech attempted this while Selah was awake and wild.


Currently this is what Selah takes in order to help her sleep:

  1. Kapvay (by prescription—this is an extended release version of Clonidine).  Selah takes .75mg at bedtime, and another .75mg when she wakes in the night.
  2. Somno Pro (OTC—a combination of melatonin, L-Theanine, and 5HTP), 1 tablet.
  3. Zyrtec (OTC allergy medication, that happens to make some people really sleepy), 5ml at bedtime.
  4. Prevacid Solutab (by prescription—for reflux/GERD), 15mg at bedtime (and another 15mg before breakfast).


After we administered Selah’s sleep meds and got her in her PJ’s, we took her on a 30-minute stroller ride, hoping she’d fall asleep.  It didn’t work.  We went back to the sleep room, which didn’t have a rocking chair, so all three of us (Mattie, Selah, and me) all got into the twin bed.  We watched Baby Einstein on my iPhone, then watched Barney on the iPad.  Selah still didn’t fall asleep, but she was C-R-A-N-K-Y.  She wouldn’t lie still and calm down, but we persevered with singing and using our bodies to rock her, walking to bounce her, etc.  Eventually, around 9PM, Selah fell asleep.  (We arrived at 7:30PM.) 


We were all relieved that Selah had fallen asleep.  She was sprawled out across my chest and body, so Mattie went to get the sleep technician.  Unfortunately, once the tech started applying leads to Selah, she woke up and was NOT happy.  It took 2.5 hours to get all 27 leads attached to Selah.



Selah hates for her skull to be touched any time, she she particularly disliked the process of getting the 20+ leads to stick to her skull and face.  That process involved rigorously rubbing each spot where a lead would need to be placed with an exfoliating cleanser on a large swab.  That needed to dry before the lead could be placed.  Then the lead would get smashed onto her skull using something like looked like a big glob of rubber cement.  Then a muslin strip was placed over the lead.  And finally a really stinky glue (literally—it smelled like fake nail glue and must be removed with acetone!) was globbed all over the muslin to make sure the leads stayed in place throughout the night.  We were told that Selah’s hands would be in restrains if she wouldn’t leave the leads on, so I did everything imaginable to distract Selah and her hands!!! 


All I can say is PRAISE GOD that Mattie was with me!!!  Mattie held Selah while I distracted with the iPhone, iPad, food, water, singing, dancing, and being silly.  None of my tactics made much of a difference (except the blueberry muffins!), but I tried to continuously have something in each of Selah’s hands.  She would get fighting mad if I restrained her hands, so distraction was the best technique.


It took until 11:45PM to get all of the leads on and in place.  Because Selah was having an EEG (to monitor seizure activity), in addition to the sleep study, she had 27 leads instead of 14, most of which were on her skull and face.  The above photo was taken about  halfway into the process of sticking leads on her, then I couldn’t use my phone to take any more pictures because I was too busy distracting Selah, and then I was too nervous to disrupt her with a photo after she calmed down!!!  Eventually, all we could see were Selah’s beautiful eyes because everything else was covered with a lead and muslin and tape!


Selah fell asleep at midnight, out of sheer exhaustion.  All three of us were still in the twin bed.  Then the tech told us that Selah would need to sleep on her back.  Oh no!!!  Selah NEVER sleeps on her back, only on her stomach.  We woke her several times as we attempted to get her onto her back.  She wanted NO part of that!  Eventually, Mattie got out of the bed (by her choice :-) to go sleep in the reclining chair, leaving just Selah and me in the bed.  Selah woke and wanted Mattie to come back, but the technician said we would just deal with her crying and try to get her to sleep on her back in the bed.  She cried so hard that some of the leads melted off her face!!!  We got those back on while Selah slept on my chest.  Then the technician helped me position Selah on her side because every single time we tried to position her on her back, she woke up screaming and fighting.


Then the tech had to put a cannula in Selah’s nose to monitor her breaking for apnea.  That woke Selah, too, as it had to be taped in several places and it had an extra prong/tube that curved into her mouth, as well as the two up her nostrils, so Selah didn’t care much for that device.  The tech had to come in every few minutes throughout the night to reposition the cannula, and then the cannula stopped working around 4AM, so a different device got taped onto Selah’s nose/face. 


The good news is that Selah slept soundly enough to get sufficient sleep data!!!  She actually slept extremely well, especially considering all of the stuff stuck to her, from head to toe.  We were even able to get several hours of data with Selah on her back!!!  PRAISE GOD!!!!!!!  Selah basically slept from around midnight until 6:30AM, which is fabulous for her.  The tech came in every few minutes to adjust her cannula and to try to position Selah onto her back, but Selah slept through most of it.  Every time Selah stirred throughout the night, I just patted her and she promptly went back to sleep, which is much better than Selah does at home!  Usually when Selah wakes in the night, she’s awake for a minimum of one hour, but sometimes is awake up to five hours before she goes back to sleep!!!  And she usually wakes several times during the night, so I’m EXTREMELY grateful that Selah slept so well for her study, which must be attributed to God answering the pleas of His prayer warriors on behalf of Selah.  I cannot thank you all enough for praying!!!


I seriously couldn’t have done this without Mattie’s help, so a huge THANK YOU to Mattie for sacrificing her night in order to serve others.  We won’t have results of the study until September 7, but I’ll report the results on the blog after my meeting with the sleep specialist.


Now, I’m off to try to get some rest!!!


PS  Conner and Cooper had a great first day of school yesterday—yeehaw!

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