Sleep Study Miss L....

So one of the referrals Miss L's paed sent off was to see a sleep specialist. She wanted to see if L was getting enough "quality" sleep not just spending a lot of time asleep. We saw Annie O'Donnell on Thursday and she remembered us from when Miss A saw her. Of course our appointment was 11:30am and she had 3 people waiting. So off we go for lunch and a play and finally get seen just after 1pm. Annie is fantastic around kids, which may sound funny, but just because a Dr specialises in paediatrics doesn't mean they handle kids well. After having a chat about her medical history Annie decides to do a sleep study as soon as possible. Considering she was in the middle of a regression she thought it best to do it asap.

That afternoon I get a call saying that a cancellation has meant they have a spot on Saturday...in 2 days! Argh! So much for time to prepare. I was so busy the next 2 days it ended up being so stressful. Friday night I had a school dinner and ended up leaving early as I knew I needed sleep before the weekend came. On Saturday I realised I needed to get L new pyjamas. They needed to have buttons to access the wires on the chest. A last minute rush out and then we got packed.

Miss L was so excited that she picked up her bag and was waving at everyone before we even had to leave.

So as we go in I try and remember all the things I should prepare myself for. Miss A was older and I could distract her with the iPad and food. This wouldn't work for Miss L....

When we arrived we had the loveliest nurse who had obviously been doing this for years. The bonus of going private is your own nurse, your own bed and a quiet place. I explained that L doesn't really speak much and she hates her head and hair being touched. So she decided to try a distraction of a DVD. Miss L has only really just started noticing TV and now Mr J turns it on at 4:30pm everyday and they watch Play School. So the nurse manages to find a Play School DVD in the hopes of distracting her. L sits on my lap and we start singing along to nursery rhymes. The amazing nurse was so quick and when L got upset she would stop and sing along with us. She started with the head probes first so the nasty job was done. Then L had to walk around and wiggle a bit before sitting down for the next step. Probes on her legs and back and around her waist. The whole process took nearly 30minutes.

 

 

The bandages are just to keep the probes in place.

 

After all that was done we had lots of cuddles before I gave her milk and went to put her in the cot. Well that was a mistake it was one big hell no from L. It was a high metal hospital cot and she did not like it. She cried and tried to escape and while I was struggling to get the side dropped she vomited milk everywhere. So now I'm leaning over her trying to stop vomit going on her probes and clothes while reaching for the nurses bell. The nurse was great quickly collecting up the sheets and helping me get L out. The wires are attached to a box which doesn't give much leeway for movement. After cleaning L up and settling her down I snuggled up with her on the single bed. After nearly 40minjutes she dropped off to sleep enough that I could transfer her to the cot.

 

As soon as she reached deep sleep the tech came in to put the oxygen probes in under her nose. OF course after a minute of taping and sorting her out L woke up and tried to rip it off. Cue getting her out of the cot and back in my arms. By this stage it was nearly 10pm and I was still fully dressed and looking at the tray of sandwiches the nurse gave me. Wishful thinking. Another 30 minutes later and she was back in the cot again. I left the room and went to the parents lounge for a coffee. 3 missed calls from Andrew who obviously thought L would be fast asleep by now....

 

By the time I got into bed it was nearly 11pm and the tech was back. L had pulled off a few too many leads and they readjusted. All good and time for me to sleep. Well for an hour at least. Again the tech came in and adjusted the oxygen under the nose and put lots more tape on. L woke up again and that was the last of sleeping in the cot....

 

The tech suggested she sleep on me as they were struggling to get any info from the leads. I wasn't going to go through another night like this so L joined me in the tiny hospital bed and the tech raised the side rails for me. After a little bit I managed to put her next to me instead of on me and around 2am we fell asleep. I think for the rest of the night I dozed but didn't sleep as I couldn't move without bumping L and I was worried about her falling out. By 6am the lights were on and we were being sent home.

The worst bit when we got home  after very little sleep was trying to remove all the sticky bits. They use a paste like substance in the hair which meant washing twice and trying to finger comb out. They only sent home 2 remover wipes to get the rest of from her body and that was nowhere near enough. Baby wipes or makeup remover was the best bit. With Miss L's Ehler-Danlos her sensitive skin doesn't like being rubbed too much. So after a few days of rubbing at small patches we had removed all of the sticky patches. Not a nice process! So now we have at least a 2 week wait for the results and in the meantime we have 5 more appointments to get through.