Ari was moved to the IMU today. It's the step-down unit for the PICU. We are happy here. We have had fantastic nurses and the room is great. Ari has been able to wean off a bit more oxygen. He's struggling a bit more with withdrawal from the heavy meds he had to take to be on the vent. This isn't unexpected. They watch it very closely. But my little guy has had a tough and crummy feeling day:(.
Before we got Ari's diagnosis of Down syndrome, I knew very little about it. I was aware that it caused a cognitive disability but I had no idea that there were physical complications as well. It makes sense when you think about it. Ari has an entire extra copy of chromosome 21. That's a whole bunch of extra genetic material that affects parts all over the body. The term "syndrome" indicates that all systems of the body are affected.
So Ari has low muscle tone; that's why sitting, walking, physically moving any part of his body is hard. His immune system is not as strong as individuals who don't have DS. His respiratory system has a harder time with infections because he doesn't have all the good mechanics to get gunk out of his lungs once it sets up shop there. Many babies with DS are born with heart defects (Ari had a minor one that resolved itself within a year) or defects in their digestive system. Kids with DS are more likely to get leukemia. There is a long list of physical challenges that you may not know about if you don't know someone with DS.
To make things more complicated, every single person with DS is different. It is probably the #1 medical lesson I've learned in our last 2 weeks in the hospital, but I'll follow with some others:
1. The range of reactions that individuals with DS have to an infection, a medical procedure, any given drug, etc. is as wide as you can imagine. I've had more than one nurse/doctor/therapist tell me that you are wasting your time if you are trying to predict how a kid with DS will respond to something.
2. Individuals with DS generally run lower on body temp by 0.5-1.0 degree Fahrenheit, so a 100 degree fever on Ari is like a 101 degree fever on his sister Rowan.
3. One of the first signs of a fever is an increased heart rate and focusing blood flow to the important areas of your body. When Ari was younger, I missed discovering a fever a few times because his torso would be feverish but his arms, legs and forehead were still cool. Ari does this almost every time he has a fever. Needless to say, I don't trust a forehead thermometer anymore.
4. Ari's metabolism is different because of his DS. That doesn't mean that it's predictable, but it's predictable that he may not follow the standard curve on metabolism of any given drug and you just have to watch him closely...as we are doing now to avoid serious withdrawal symptoms.
This is all just FYI, but it's stuff that keeps bubbling to the top over and over again these days in the hospital. My Ari G, X-Man is awesome, but he's different in many ways you might not expect. However, he's similar in so many more ways...but you can see many of those:)
Love to all,
Dorothy
Before we got Ari's diagnosis of Down syndrome, I knew very little about it. I was aware that it caused a cognitive disability but I had no idea that there were physical complications as well. It makes sense when you think about it. Ari has an entire extra copy of chromosome 21. That's a whole bunch of extra genetic material that affects parts all over the body. The term "syndrome" indicates that all systems of the body are affected.
So Ari has low muscle tone; that's why sitting, walking, physically moving any part of his body is hard. His immune system is not as strong as individuals who don't have DS. His respiratory system has a harder time with infections because he doesn't have all the good mechanics to get gunk out of his lungs once it sets up shop there. Many babies with DS are born with heart defects (Ari had a minor one that resolved itself within a year) or defects in their digestive system. Kids with DS are more likely to get leukemia. There is a long list of physical challenges that you may not know about if you don't know someone with DS.
To make things more complicated, every single person with DS is different. It is probably the #1 medical lesson I've learned in our last 2 weeks in the hospital, but I'll follow with some others:
1. The range of reactions that individuals with DS have to an infection, a medical procedure, any given drug, etc. is as wide as you can imagine. I've had more than one nurse/doctor/therapist tell me that you are wasting your time if you are trying to predict how a kid with DS will respond to something.
2. Individuals with DS generally run lower on body temp by 0.5-1.0 degree Fahrenheit, so a 100 degree fever on Ari is like a 101 degree fever on his sister Rowan.
3. One of the first signs of a fever is an increased heart rate and focusing blood flow to the important areas of your body. When Ari was younger, I missed discovering a fever a few times because his torso would be feverish but his arms, legs and forehead were still cool. Ari does this almost every time he has a fever. Needless to say, I don't trust a forehead thermometer anymore.
4. Ari's metabolism is different because of his DS. That doesn't mean that it's predictable, but it's predictable that he may not follow the standard curve on metabolism of any given drug and you just have to watch him closely...as we are doing now to avoid serious withdrawal symptoms.
This is all just FYI, but it's stuff that keeps bubbling to the top over and over again these days in the hospital. My Ari G, X-Man is awesome, but he's different in many ways you might not expect. However, he's similar in so many more ways...but you can see many of those:)
Love to all,
Dorothy
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