Zaccy vs sleep studies: lessons learned from a 3 day sleepover.

Last week me & Zaccy spent 3 nights in hospital for sleep studies. Sleep studies are a part of Zac’s life with sma – as his muscles are weaker they can become more relaxed than normal during sleep so it’s important he gets his oxygen & carbon dioxide levels checked every so often to make sure he’s breathing efficiently during sleep. This time we were going to get a review of his night time breathing and we were aiming to set up ventilation called “bi-pap” – without being too technical this is a machine with a mask over the nose that delivers big breaths as you sleep keeping the airways open. The thinking behind it is that Zac’s chest shape would improve using it as he would be breathing more efficiently and should help him have more of a rest at night as the machine would help do the hard work! That was the plan, however, Zac never likes to follow a plan; after three nights of broken sleep we were discharged minus the bi-pap machine. So here’s the lessons I’ve learned from our little sleep study:

1) No-body sleeps much during a sleep study!! Your baby is hooked up to a few monitors, little stickers are dotted around their wee body and laser sensors are attached to ears, fingers & toes. It’s not much fun trying to sleep with all that gear and every time your child wants a change of position these clips & sensors need moved too. Then the monitors alarm and sing at you every wee while and the nurses pop in & out too so yeah not much sleep actually happens.

2) My child is mr chatterbox. On the third night we had the task of distracting Zac while we attempted to wear the mask for longer than 5 minutes. I found out that night that it’s possible to have a conversation about a few small stickers for a very long time – 2.5 hours to be exact! He definitely won the prize for “Chattiest in the ward” and won quite a few fans before finally giving in to sleep!!

3) Chocolate bars do not make a good breakfast. I found out that after around 4 hours of sleep a night it’s not a good idea to eat a caramel bar for breakfast – they do not give you the energy boost you desperately need and you feel like you could eat everything in sight for the rest of the day.

4) My little Caleb is amazing. Normally hospital stays are very difficult for Caleb – there’s too much change in routine and all the worry can be too much for him. Last week was different – my little Caleb took everything in his stride and was an absolute star! He coped with every arrangement and made me a super proud mama!! Although I was in hospital staying with Zac I learned a very important lesson about Caleb – he is learning to deal with his different kind of normal in his own way and I admire him so much for being the star he is!

5) I have a very lovely husband. As well as working his day job, taking meals out the freezer, recording my programs and bringing me chocolate, Craig also drove back and forth to Glasgow four times a day just so me & Zaccy didn’t have to stay in hospital all day. He very patiently listened to me as I went over every detail of the arrangements for each day & he stayed up to text me late at night when I clearly wasn’t getting any sleep at the hospital. I learned I really do have a top husband!

So after our 3 nights stay the doctor came to see us to let us know that Zac wouldn’t be taking the bi-pap machine home as they needed to look further into some of his results & machine settings. I looked & felt like a zombie & felt a bit like we had wasted 3 nights. That was a week ago & after catching up on some sleep I realised that the week hadn’t been wasted – I took more than just bags under my eyes home – I took home the fact that my little Zac had faced a challenge & coped yet again and that Caleb is adapting to cope so well and is a star! My boys made me so proud last week to be living our different kind of normal.

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