Sleep Study: Preparation and Execution.... Round 2

This is Round 2 even though Round 1 never really happened... We got all of Noah's equipment to the hospital (on time, I might add) and when we got down to the sleep lab, they couldn't figure out how to hook Noah up to the monitors while he was wearing his humidifier. Since I refused to let him sleep all night without humidification, they told us, "Oh, just come back another day." I was so irritated. Did they not see that it took 2 grown adults to get Noah and all of his stuff here? It's not that easy to just "come back." So that was back in March and here it is nearly July and we are finally heading back for the sleep study. Here we go....

[Edit: I didn't get to take as many pictures of "the action" as I wanted to but I'll try to explain it and you'll just have to take my word for it.]

So I start in the morning by preparing sterile water bottles to take with us in the car. We have to take these with us all the time to use when we suction. "O" is for Oral Suction and "T" is for Trach Suction.

Our to-go bag usually stays pretty well stocked at all times (in case of an emergency where we have to leave quickly) but it always gets double checked the day of an appointment to make sure there is nothing extra we are going to need for a particular day.

Today I packed extra wipes and diapers since we are staying overnight and he gets changed very frequently.

I'm not too sure of the set up that they have in the sleep lab so I am going to just pack the can of formula and a few extra bottles in case they don't have a fridge to store pre-made bottles of formula.

We also have to bring his huge humidifier with us. We don't take this anywhere usually but since he does sleep with it on, we have to bring it. Last time, they could not, for the life of them, figure out how to hook up Noah to his monitors with this humidifier on. Since I refused to let him go all night without humidification, they told us we had to come back another time. Hopefully they will get it right this time. We didn't actually end up using this so it was kind of a pain in the butt. They hooked him up using his HME for humidification but at least we had the humidifier just in case.

Then we take it all to the car, down 3 flights of stairs, and off we went to Dell Children's. We arrived safe and sound then we unload everything onto our wonderful double stroller. Noah goes in one seat, his equipment in the other.

We got down to the sleep clinic and met our awesome tech, Melissa. She said she remembered us being here last time and assured me that we would get this sleep study done the right way. I had to fill out a bunch of paperwork and then she finally came back in to get him hooked up. 

He had wires on his legs detecting movements. Some on his eyes, chin, and forehead. He also had 2 belts on, one across his tummy and the other across his chest to monitor how hard he was actually working to breathe. then he had all of the lovely EEG wires attached to his head. Noah was doing so good and tolerating everything that was being done to him until the EEG wires had to be put onto his head. He loves having his hair washed or brushed but he obviously didn't like his hair getting dirty.

He finally got all hooked up and he fell asleep like 5 minutes later. He slept so well all night. He was woken up by a Respiratory Therapist around 5am so she could poke his finger and draw some blood. They wanted to check his CO2 level. After that, Melissa came back in and started unhooking his wires. Then we were set to go home.

We got home and started unpacking everything. I also gave Noah a bath because he had sticky stuff all over his cute little head.

After his bath he was in such a great mood. But Mommy was sleepy so I went and took a good nap. 

Overall, this experience was much better than the first time around. I am so surprised how well Noah did sleeping in an unfamiliar place and having people mess with him. Hopefully his results turn out fine and it will be one less thing we have to worry about for now. We have a Trach Clinic appointment coming up on the 18th so we will know then. We will also be meeting with the Palliative Care Team that day, as well. We don't have any appointments for the next 2 weeks but keep a look out for an update post after his clinic visit.