More Equipment

Isaiah got his ventilator, which is used for a CPAP for him. The FDA has not approved CPAP machines for kids under age 7, so they use this fancy ventilator that has settings including the CPAP. It has a little humidifier attached to it, that heats up the water and then cools it. It is computerized and very fancy. I am on a huge learning curve trying to remember all the details for how it works.
We turned off all the alarms, except for the one for power (it has back up batteries) and when the water is empty. Unfortunately, the water only lasts about 8 hours maybe, at least that is what we found last night. So it will need to be filled up part way in the night so we don't get woken up to a loud beep located by all of our heads.

Children's told us the only way to get him used to this mask and machine was to introduce it slowly and playfully. We tried that a couple of times during the day but while he tolerated it for a few minutes I knew it was going to take a long time and my gut just felt he needed to just try it at night and I felt he would handle it well. So last night was our first night.

We put it on him and right away he became quiet (not like him at bedtime). His pressure is almost as low as it can go right now and the oxygen goes through the machine. He began shutting down in a way, no crying though. This was similat to what he did when we began the oxygen. However, I just encouraged him and asked him if we wanted me to hold him. At first he said "no" but then he allowed me to. I held him until he fell asleep, well actucally we both fell asleep.

About an hour into sleep I moved him onto his bed, which is next to mine. He slept without waking the entire night!! Not even a complaint about the mask. In the morning he woke up pretty cheery too. While this contraption mask is quite cumbersome and awkward, it does seem to help him breath a lot better and get better rest, so far. At nap time again today, he put it on, quieted down quickly and I held him until he went to sleep which was only a few minutes this time and he slept 2 hours without a peep. Now mind you, this is the child that has not had a night like that but maybe a handful of times. Typically he whines, tosses and turns, cries, reaches for me or kicks off his blankets numerous times at least, not to mention the snoring and gasping for air that often happens. None of this has happened since using the CPAP. I pray this continues.

 It is not his favorite thing. However, today when talking about it with the kids he said it was to help his heart. Such a hero of mine. I think I would have such a hard time wearing this mask. I put it just  briefly up to my mouth to see what it felt like and I already felt too confined and like I was choking with it. I always hated it when the put the oxygen masks on me during labor when I wasn't breathing so well. 

Isaiah was also a good sport to pose for these photos. I asked him to get into his bed to take a picture and he climbed right in. I love this little guy.