Just like everything else, we needed two attempts at the sleep study to get it right. The decision was taken that Joshua should undertake a sleep study so that we can see in detail how he breathes in different stages of awake and asleep and what affect that has on him. The respiratory doctors had agreed that Joshua’s ventilator should be set at a lower rate during the study to try to promote some of his apneas so that we can capture something. And as usual somewhere between the respiratory doctors, the PICU doctors and the nurses the communication got lost and they kept all his ventilator settings the same even though Laura told them when they set it up. So as expected, the ventilator did it’s job and Joshua had no desats during the first study. The respiratory team found out and made a plan for round 2, but this time made sure that his ventilator was turned down. Why do we have to do everything twice here?

Joshua on the sleep study

The study seems to show that Joshua does stop or have very shallow breathing when asleep and that the level of carbon dioxide in his blood rises during this time. He doesn’t seem to suffer with this when awake though so now they’re trying him off the ventilator when awake which is all well and good, except he’s only 4 months old and sleeps most of the day and the time it takes for him to go from wide awake to fast asleep is nanoseconds so you really need to be on the ball to catch him before it’s too late. We’ve had mixed success with this, catching him most of the time, but failing on occasion to the point where he desats and needs bagging. To try and make things easier for us we’re going to try and get him into a daily routine so that we can predict a little better when he’s likely to fall asleep. The problem with this is that in the PICU unit where we are, there are no windows and therefore no natural light. It’s impossible to tell if it’s day or if it’s night. Another issue is that it can be as busy at night as it can be in the day on the ward, meaning quiet time shifts on a daily basis. And thirdly, this is all for nothing if the doctors and nurses don’t stick to the plan and communicate the correct plan to each other. We’ve already heard about nurses taking him off the ventilator for several hours overnight and then letting him fall asleep with it off. Maybe we should get a chart on the wall just in case.

I know I’m moaning and I shouldn’t be. All of the staff at the hospital are brilliant and I can’t thank them enough, but it’s so hard when even the smallest detail can have a big impact on Joshua. To show our support for the hospital myself and several other family members are taking part in the Fun Family 5. If you’d like to sponsor us, Gemma my sister has created a just giving page and thanks to all those who have already put some money forward for this great cause.

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