Night of the Beep Beeps

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We had a very eventful and tiresome night last night. Cameron and I stayed up much too late after Evan went to sleep playing Minecraft on the iPad. Minecraft is a video game where you build your own world. There are two versions survival mode with zombie like creatures and creative mode. Cameron only plays creative mode where you build things like houses, statues, roller coasters; pretty much anything you can imagine. Cameron is very good at the game;me not so much but he is teaching me and it is lots of fun. Soon after I put Cameron to sleep the beep beeps started and I knew I was in for a long night! Evan’s oxygen saturation levels were dipping into the mid 80’s. I tried various positions which worked briefly and then the beep beeps. It was time for his LASIX so I gave them a little early and it worked briefly until the beep beeps started. He would dip to 87 and come right back up. The lower limit is 88 so anything below that makes it beep. Ryan and I took turns manning the beeps. At times Evan would move the cannula out of his nose causing it to beep. We would get it back and get a brief rest before they started. Around 1:30 I fell asleep and was jolted awake because it was time for him to eat. I go I to the kitchen only for my phone alarm to go off because I had set it. I set up the feeding pump and hit run and laid down on Evan’s floor where Ryan had been sleeping but I sent him to bed to get some rest. Guess what? The tube was clogged so the machine was beeping! I unclogged it and about 20 minutes later it was beeping again! So I just got a new bag and started over. All was well and fell asleep until the feed was done. Around 6:30 am the beeps starts back up again. I increased his oxygen levels to 3 liters and the machine was still beeping So we went into the ED (emergency department). Evan had an emesis the day before and I was afraid he had aspirated some into his lungs which was causing the desaturations.

 

Once in the ED Evan was wide awake and doing great. They did a chest x-ray and it only showed a small increase of fluid on the right side so they ordered an extra dose of LASIX and gave us the option to stay or go H O M E of course we choose home. Evan had a great day and his saturation levels looked great until he fell asleep! Once asleep his O2 levels started to dip in the lower 80’s and I had bumped him up to 3 liters of oxygen. I made a quick call to the doctor who said I should probably bring him in since he was on so much oxygen. We were directly admitted onto the floor without having to go into the ER! We got to the hospital around 11pm and Evan thought it was party time. He was wide awake and happy! He fell asleep around 1:30am and quickly after the beeps started. They increased his oxygen but the levels didn’t come up. It took the fellow over 2 hours to find a optimal position for him which was him laying on his side and instead of a cannula he had a mask at 50% oxygen.  Once he was in a good position he stayed that way until morning.

As you recall he has always needed more oxygen when sleeping and it was  and combined with congestion it is making it harder for air to get in his airways. The medical term for this condition is Obstructive Sleep Apnea (OSA). OSA is common in children with Trisomy 21 because of they can have floppy airways and once sleep everyone’s airways sort of relax. Evan will have a sleep study in a couple of weeks to confirm this and to come up with a plan of action. We DO NOT need to stay in the hospital until then we just need a plan to ensure he is safe at home when sleeping.

 

CHOP has great information on their website regarding Obstrucitve Sleep Apnea. To learn more please click here.

 

 

 

 

 

 

 

 

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