As I mentioned previously, we were sent home from the hospitalizations with a pulse oximeter. A glorious little device that tells us the saturation of oxygen in his blood, which we need to keep above 90 percent, and his pulse rate which needs to stay, roughly, between 55 and 140. If it gets outside of these parameters, an alarm will go off, and we will need to go check on him. Now why we didn't have one of these sooner, I'm not sure. It seems like a common thing for others with similar diagnoses, and it seems pretty important.
He used to take two medicines to help him sleep. He had weaned off one of them in the hospital, and when we came home we noticed he just wouldn't sleep anymore. So we started him back up on a smaller dose. Well the second night we administered it, his pulse rate was so low, it was in the 40's. Although he was breathing fine, and his oxygen was normal, we worried and called the hospital, who advised us to call 911 because we couldn't wake him up. Good news: police, fire, and paramedics were in our house within minutes. Bad news: Isaiah had a ride to the hospital. He ended up being fine, but we decided we were never giving him the medicine again. However, we have no idea how long that had been happening to him, as we would have never known he had a low heart rate, and just thought he was sleeping great in the past. Scary, huh?
The second medicine that helped him sleep ended up making him cry every night when it wasn't taken in combination with the first. We went through about two weeks of adding and subtracting things, taking him to the GI doctor, etc. before we figured that out. He would scream at the top of his lungs for no physical reason we could see, and his heart rate would be setting off the high alarm. Once we took that out, he was comfortable and didn't cry anymore. But, he didn't sleep well either.
Now, sometimes he just wakes up throughout the night and makes enough noise to keep us awake. Sometimes his oxygen or pulse monitor is going off, and we need to run into his room and make adjustments. Sometimes he is crying. Sometimes he is laughing, hysterically, in the dark, for no apparent reason. But he has a very hard time just getting rest, and that means we have a very hard time getting rest. We are trying to up one of his comfort medications at this time, and it seems to be helping, but it is a slow increase so we will see how it goes. Fingers crossed...
Now, we know that babies = lack of sleep. Duh. But when we decided to have another little one added to the family, Isaiah was confidently sleeping through the night. Every night. So the thought of adding another non-sleeper to the household is making me anxious. I'm sure we will get through it, and everything will be fine, but it's not going to be easy. So for those of you that see me on a regular basis, please extend some grace my way. And forgive the fact that I may look like I just rolled out of bed...
|Belle entertaining Isaiah with his Squigz.|
|Isaiah loves his baby doll.|
It's one of the things he requested with his Tobii Dynavox.
|Isaiah clearly not impressed with me taking his photo.|
|Isaiah in his stander. Pretty happy guy.|
|Isaiah getting in some sleep when he can. |
This was after he got home from school on a cold winter day.