While at Liam's first Kinactive Kamp, Liam sounded worse and mom was able to get a sleep study scheduled for Liam 3 days after returning home from camp. 

I had been told by other moms sleep studies are NOT fun, but our experience is one of a kind... it was HORRIBLE.

In a sleep study, the child shows up before bedtime and gets hooked up to quite a few monitoring systems: EEG, EKG, sensors for restless leg syndrome, sensors for eye movement, multiple cannulas (1 for CO2 level tracking, 1 for supplemental oxygen if needed), tCOM (CO2 level tracking). Lots of cords... who could get good sleep with all of that hooked up to them? Not to mention the super luxurious hospital bed. Every hospital has different parameters, at Mott, I was told oxygen saturation levels that dip below 90 for over 5 minutes will get supplemental oxygen added at 0.25LPM each time. The patient/parent are not able to see the data being recorded, it's all hidden and you have no idea what things are reading at - not ideal for a NICU/PICU medically complex mother who knows how their son reads in certain situations. 

Liam went into the sleep study on 2LPM of oxygen support. They took the oxygen support completely off of him and set up all of the monitoring systems. There were two techs and I could tell one was in training, I was questioning in my head various set ups because I have seen these systems while admitted in the hospital before. 

I knew Liam needed oxygen support to maintain acceptable oxygen saturations. However, I had no idea what was going on with all of the machines because this is hidden from the parent during testing. At 3AM, they woke us up saying they believed Liam needed to be admitted to the ER because his oxygen support had hit 2LPM. They were bringing the 'MOVE' team to move Liam to the ER. I called Sean and we discussed the situation with the MOVE team. 

Sean was very clear, we needed to finish the sleep study and finish gathering the data so we can work with the doctors to figure out next steps. We needed to finish the study so we could determine next steps for Liam. The team agreed to the plan and Courtney took Liam home at 5AM once the study concluded.

The following afternoon, multiple doctors called asking us to come be admitted for further evaluations based on the preliminary sleep study results. We agreed to come in once a plan of action/testing was established - we aren't going to go sit in the hospital without a clear plan. It took the doctors a majority of the day to connect and drive a plan. After creating the plan, we went to the hospital that night and we did a cardio echo and chest x-ray. The cardio echo results were normal and the chest x-ray still showed remnants of bronchiolitis. We waited for rounds the following morning to figure out next steps.

In the morning, someone from the ENT team came in to discuss removing Liam’s adenoids and to get him scheduled for surgery. We thought we were finally going to be able to do something to help our son breathe. That all changed when pulmonology came in that afternoon. Their recommendation was to trach and vent Liam. We were SHOCKED there was nothing else they were willing to try. We told the doctors we would not agree to trach and venting Liam and wanted to have further discussions regarding other options. The very next day we had a joint meeting with ENT, Pulmonology, and the pediatric team. It was at that time we found out that Liam had high CO2 readings and that was the biggest concern. No one had shared the data from the sleep study with us up to this point. Per pulmonologist recommendation, no one on the Mott Pediatric ENT team was willing to perform the adenoidectomy because of the risk. The risk was too high for Liam to successfully come out of anesthesia and to be extubated post op. It was at this time that we asked to be discharged to seek a second opinion.