One of the many check ups Elis has to have due to his achondroplasia is something that's called a sleep study. A full sleep study is normally done over night at hospital, the patient is hooked up to various machines that record information on breathing, oxygenation, heart rate and movements during the night. It is useful as it helps detect potential issues with sleep, in particular sleep apnoea: a sleep disorder that causes pauses in breathing and often is coupled with snoring. It can have serious impacts on daily life as it means the body isn't getting all the oxygen it needs when it stops breathing, it makes for poor sleep, higher risk for bad moods and tiredness throughout the day, it can even impact growth in children. Common treatment is removal of tonsils and adenoids if they are too large and are obstructing the passageways. In people with achondroplasia all their respiratory canals are already narrower making them high risk for infections, hearing problems and sleep apnoea, hence the need for regular monitoring of all those to ensure early intervention if and when needed.
Elis has his first sleep study when he was about 6 months old. It was not what I had been told to expect at all as I had only been told of the sleep studies they do at hospital. The parents that told me about them all agree that they are a very draining affair. The parent get very little sleep as they keep their child company and try to ensure that they remain as calm as possible despite A LOT of different probes attached to everything from fingers to chest and face. It doesn't sound like an experience that makes it easy to go to sleep so I can only imagine how difficult it is for children to relax. It is important that they get a full night's sleep with as many hours as possible to get a more accurate picture of what the data reads. Now I know for a fact that children aren't the best of sleepers even when they're home in their own environment, so how families make it work overnight in hospital I don't know!
As you might have guess we have not experienced an overnight study in hospital yet (I've no doubt we will in the future). I was very pleasantly surprised to find out we could do our first study at home. It is a much more basic study which only records blood pressure and oxygen levels in the blood with use of a finger/toe probe that's linked up to a machine. It is of course nowhere near as accurate as being in hospital with all the extra tests, but my understanding is that they like to try to avoid making parents drag such young children in overnight if possible. I was told we'd do the first study and go from there depending on what the readings found. While that study didn't seem to cause concern they also felt it didn't have very clear readings, probably because Elis had the tiniest little toes and even though I had attached it to his big toe at the time I don't think I had it connected as well as I ought to have, he was also (well still is to be fair) a very restless sleeper so maybe they didn't have an accurate graph of his deep sleep. Either way I was glad we weren't in hospital, even just the one probe seemed to be of annoyance to him.
Six months down the line and I've been given one of the pulse oximetry machines again. I can but hope I hooked it up better this time (had to use one of his smaller toes this time ironically enough because his big toe is so wide now that the two different probes wouldn't sit right on it) or we might need to do the next one in hospital. As he'll always be high risk for sleep apnoea it is something they will continue to check up on, we've also been told to monitor his sleep by watching and listening to him and contact them if we worry that he stops breathing when sleeping. Our eldest did it as a baby (I've been back to the GP for a referral for her recently because I now wonder if she never grew out of her sleep apnoea), it was terrifying to hear our baby stop breathing although our doctor at the time just brushed out worries to the side. That experience has at least made me feel pretty confident that Elis doesn't do it for now at least but I have no doubts these machines are better equipped at diagnosing him than I am. What I can tell you without a shadow of a doubt is that I am even more sleep deprived than usual today as part of the test you need to make sure to take note of all night time activities, when he wakes, feds, gets his nappy changed and what time it is when he settles back so that they can analyse the data accurately. Fingers crossed we get an all clear this time round too.
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