Matteo Update

At some point in the middle of February, Matteo, who normally accepted his fate of having a CPAP filled night, started to fight me when it came time to put on his mask. I basically had the whole process down to a science and knew exactly what to do and when to do it. I was the only person who could get it on even after his nurse Karen had several failed attempts. I had the magic touch.

So when the night came that no matter what I did, Matteo would not let me put him on CPAP, I had no idea what to do. None of my tactics where working. The second I opened his door, or grabbed the mask he would wake up crying, curl into a ball, and wouldn’t let me near his face. I tried and I tried and I tried but nothing worked. We finally decided to just let him be and gave him a night off of CPAP.

Matteo had never spend a night totally CPAP free. Yes there were a handful of nights where he got as little as 2 hours but at least he got 2 hours.

The next night came and again I tried and again the same story. Screaming, thrashing, curling up into a ball. He was having none of it.

Ok, so two nights with out CPAP.

By the third night I was starting to panic. Not because he was having issues breathing and I was worried for his health but because I was worried the doctors would be mad at me for not being able to get it on. Yes, I am still 12 and scared of authority.

The next morning I decided to phone the hospital and find out what I should do. Given that it was a weekend all I could do was leave a message and continue to try what I had been trying.

Truth be told, while Matteo did have a slight increased work of breathing during the day, he really was handling no support at night very well. And really, he had been on some sort of breathing support his entire life, so it made sense that his body would struggle a little bit while it figured out how to deal with no more support.

A week into the whole ordeal I finally heard back from the hospital. I told them what was going on and how we thought it had to do with teething but no matter what we did, we could not get it on. They asked how he was managing without it and we said fairly well, so they decided to move up his sleep study so they could confirm he really was doing well at night.

The plan for the sleep study was to do it at Children’s Hospital in the ICU for 2 nights. Chad was scheduled to take a course out in Chilliwack so it would just be Matteo and I. Long story short, our first night was less than ideal. I kind of assumed that if they were going to do a sleep study on Matteo, they would, you know, want him to sleep and would therefore put him in a spot that would allow him to do so. Not so much. We were in the “quieter” part of the ICU, but still with the general population. There were lights and beeps and noises and all the things one would expect to find in an ICU situation. Matteo thought it was great and wanted to explore and look at every single thing. It took me FOREVER to finally get him to sleep only for him to sleep for 3 hours, then wake up ready to party. It then took another 3 hours to finally get him back to sleep for which he slept another 3 hours. I was set up in a cot next to him and got a grand total of 3 hours sleep.

The whole experience was a nightmare. I mean, obviously we were lucky because Matteo was just there to sleep and not there because he was sick, but in terms of a sleep study there was very little sleep happening.

The only saving grace to the whole night was that Matteo did not have one “episode” and his oxygen saturation was perfect (or as perfect as Matteo usually gets). The doctors were so impressed that they sent us home with out having to do a second night (thank GOD!) and told us that Matteo did not have to use CPAP unless he really looked like he needed it and they would call us to see us in a month.

The worst possible night for the best possible outcome! I think I was more excited that I didn’t have to sleep at the hospital again than I was about no more CPAP!

Being able to put Matteo to bed with out having to hook him up to machines and worry about numbers and this and that is amazing. It’s also been great having the opportunity to sleep through the night! Matteo was always waking up at least once and I just knew that it had to do with his CPAP machine waking him up. I had a feeling that as soon as we got rid of it, he would sleep wonderfully through the night. Low and behold, that is exactly what happened.

In true Matteo fashion, he lets us know when he is ready to do things. He didn’t want to wait until May to get off CPAP. He wanted off now!

Now, the one bonus to having CPAP (if there is such a thing) is having the support of at home nurses. Matteo’s nurse Karen, has been with us from the beginning and has basically become a part of the family. Now of course there are rules and nurses and families aren’t suppose to get attached but seriously how do you not become attached to someone who is in your hours for 20 hours a week looking after your child.

I knew that as soon as CPAP was no longer needed Karen would no longer be “needed” but we were lucky enough to get a few bonus weeks before the program was cancelled. Last night was Karen’s last shift with us and it was a sad one. Matteo loves playing with her and I love the company. Not to mention that because of her I was able have breaks and not always worry about putting Matteo on CPAP. There is something exciting about the idea of Matteo no longer needing all of this outside help, but at the same time it’s so hard to say good-bye to someone who has become so much a part of your life. Karen is truly going to be missed, but since she does live in the neighbourhood, maybe we’ll run into her every so often ;)

Words can not describe how much stress has been lifted from our shoulders now that Matteo is no longer on CPAP. Now we get to start a whole new chapter, CPAP free.