Landon's sleep study

The awesome horrible story of Landon's sleep study, told by Braydon:

So the day of Landon's sleep study started bright and early.  We had a genius plan to wear Landon out all day long and cut his nap extra short.  This way, by the time we hit the hospital at 7pm Landon would be so tired he would be ready to fall asleep instantly! Such a smart plan I know....if only it worked that way.

We head into Children's hospital at 630 and we really didn't have any idea where to go.  The only thing we had  received was a letter that stated "Your sleep study is scheduled to begin at 7 and if you are late, we will ask you to reschedule."  So, we went to the customer service area and told them we had arrived for our sleep study.  The lady started to check us in and low and behold, we just so happened to end up at the right place.  Buuuuttt something started to go wrong.   

Firstly, the lady behind the counter pushed some paperwork my way for me to sign.  I asked the lady what this paperwork was for and she told me it was to admit Landon into the hospital.  Dawn and I really didn't understand why they were going to admit Landon into the hospital for a sleep study but *shrug* these people are the professionals.  Maybe this was commonplace for a sleep study, we didn't really have any experience with this. (See the semi-useless letter as mentioned above)

So the lady calls upstairs and lets us know that our room was on the 5th floor and proceeds to escort us up to our room.  We gather up all our stuff and trek to the elevators with the two little ones in tow and make our way up to Landon's room.  Upon arrival, Landon's nurses came right in and started to take his vitals and doing all the normal nurse stuff.  Around about this time, Dawn asked the nurse for some details about the sleep study.  The nurse seemed pretty confused and said she didn't know anything about a sleep study.  Odd....especially seeing as that's why we're at the hospital.  So we start to ask some questions as to why they think we are at the hospital.  According to the nurse, we were admitted to the hospital for observation.  Observation? Observation of what?  The nurse had no idea either and nothing was in our file.

We then spelled out to the nurse that we were there for a sleep study and not for some oddball observation. So the nurse called down to the customer desk, where we checked in, and began to explain the issue.  Mind you, its about 815 now and Landon is beyond tired.  Remember that awesome plan of burning him out early? It was beginning to backfire, we needed to get this show on the road.  So then we get told by the nurse that she is going to take us back downstairs to the check-in desk and find out what is going on.  We then grab all of our stuff, our two kids, and trek back down to the first floor to find out where we are supposed to be.

Finally, someone from the sleep study area finds us and has apparently been looking for us.  They explain to the front desk lady that we are supposed to be in a sleep study and not in a room.  There was apparently some confusion about being admitted into the hospital because Landon was also supposed to have a swallow study in the morning.  So inquisitively we asked what time the swallow study in the morning was....they had no idea and he currently wasn't schedule for a time but they would try to fit him in.  So *facepalm* the plan at this time was to go do the sleep study and after it was over, we would go back up to our room on the 5th floor and wait for whenever someone could figure out when our swallow study was and then do that.  This was an awful plan but we had to get moving as Landon was really really tired.

So FINALLY at about 915 we make it into the sleep study room.  This room was awful.  Apparently this was a newly renovated area and there room contained zero comforts and didn't even have a single picture on the wall.  Just a bland, sterile, non-kid friendly (ironic in a children's hospital) room.  The nurse came in and proceeded to list a myriad of rules.  "Don't open the door a lot, don't walk around, don't snore(?!)"  the rules went on and on.  Anyways, we seize the moment and quickly put Landon in his pj's and try to get him ready for bed.

Around about this time he has become so tired and so cranky from the multiple sets of nurses that have been messing with him already that he has descended into madness. If a nurse even came into the room he would start crying. *sigh* The nurses needed to put a bunch of probes on his chest and on his head so we did our best to make it fun for him and laugh about it and he kinda perked up a little bit.  The nurses told me they had another item they had to put on his face.  I recommended they waited till he was asleep as he generally sleeps like a rock. Dawn had to head home about this time to put Sydney to bed so she kisses Landon goodnight and we put the cap on Landon's trach (YAY!) and I then cuddled up and started reading some books to get him to fall asleep.  He was so tired, the poor guy fell asleep turning the page of the book.  JACKPOT! ...or so it seemed.

After an hour or so, the nurses just kept coming in and out and just touching Landon and messing with oddball random items.  I really didn't think anything of it, Landon slept like a stone and I would have to put him in a rollercoaster to even attempt to wake him up.  That is untill the nurses discovered Landon's "I'm waking up right now" trigger.  Apparently the items (yes more than one) that needed to be hooked to Landon's face was a sticker that goes on his upper lip and another oxygen tube that goes into his nostrils.  I would imagine that this would be extremely uncomfortable for an adult that understood what was going on, let alone a child that doesn't have any understanding of whats happening.

The moment the stickers and what-nots touch Landon's face, he immediately wakes up with level 10 crazy and proceeds to rip everything off his face.  The poor guy got really upset and I helped to cuddle him back to sleep.  I let the nurses know to let him fall asleep again and give it another try to connect the probes back onto his face.....I had my doubts though.

So an hour or so goes by of Landon sleeping (with the trach capped and none of this non-sense connected to his face mind you) and the nurses attempt to put the sticker and oxygen tube under Landon's nose again.  This was a bad choice.  He woke up instantly and upon seeing a nurse messing with him, began to initiate a hospital equipment destroying alligator barrel roll.  He managed to completed about 4 rolls before he had removed just about every single probe that he had on his body.  I don't think the nurses were very happy but they expressed to me that those probes weren't really necessary.  *deep breath* It was now about midnight and my politeness was beginning to give way to bitter honesty.  I failed to understand why we went through all the trouble to connect these items in the first place but *sigh* I digress.  The nurses said the other probes weren't that important but its mandatory that they get the probe under his lip connected.  So what did they do?  They taught me how to put it on and wished me luck.....wonderful.  

At this point I had decided that I was going to give this my best effort.  So I cuddled Landon to calm him down and I waited till his breath started to get really deep (oh yea, the trach is STILL capped but now with no probes or anything connected...I'm assuming he doesn't need the trach *sigh*) and then I slowly reached over to the probe and lightly touched it to his face......BIG MISTAKE!  Landon really got upset and he told me "no more dada."  So at that point, I was done, he was done.  I let the nurse know the test was over and since they didn't have the equipment in the room, Landon's humidity machine, that we were going to leave and I wished her a good night.  She told me she wasn't sure if I was admitted into the hospital or not due to my room being held on the 5th floor.  I told her that when she figures it out to give me a call at my house.  I grabbed all of Landon's things and carried Landon back to the car.  It was about 1245.  I called Dawn and let her know a brief synopsis of what had happened and that we were on our way home.

Once we got home little Landon went right to bed and was so happy to be back in his room with Blue, his angry bird,  and all his books.  I told Dawn about our adventures and that the morning may be extremely interesting.  We may or may not have a swallow study, we may or may not be admitted into the hospital, and we may or may not be expected to be on the 5th floor.  After all the mess of the evening, we really didn't care.

After a few weeks I got a call from Dr. Quinlan letting me know that from the information they were able to gather from the sleep study, that things actually looked extremely promising.  I was elated as I thought the whole thing was a wash.  So now we are going to start capping Landon's trach and slowly moving him towards entire days where his trach is covered up.  In March we are going to meet with the doctor again to line up the long term plans for Landon and see if its the right time to remove his trach.  Very exciting news!

Oh...and we never did hear back from the hospital.  I'm guessing they figured it out *shrug*