LOTS of cuddle time in the hospital!
WHAT!!!! It's milk for the first time in 6 days.
Carter slept well with the exception of some leg pain. Usually liquid Tylenol resolves this problem right away, but now he can't have it because of the sugar that's in it. So, we had to crush a pill and mix it with Pedialyte. They are doing an experiment today. They gave him some milk and a lactaid pill. This is an enzyme that helps the digestion of milk sugar. If he has no diarrhea, they will increase his diet to include dairy and we will be on the way home - maybe tomorrow.
Docs are thinking the problem is sucrose (commonly known as table sugar), but that won't be confirmed until next week sometime. Sucrose is made from glucose and fructose. His body can tolerate glucose solely, but I guess NOT the fructose. Sucraid has been ordered and is a medicine that will help his body breakdown and process sucrose as it's digested. This is a rare drug and will take a week to get in. So, even if we get to go home, we will be on a very limited diet excluding sucrose, obviously. We will have a slew of follow-up appointments.
I have a lot, lot, lot to learn about all this!
For example, we ordered salad dressing the other day and all it said on the nutritional label was sugar. Well, he could not have it because we didn't know what kind of sugar was in it. More than likely, though, it's the kind his body can't tolerate.
Am I making any sense at all????
The GI Doc has been trying to contact my geneticist back home. I am thankful for this. After all, Dr. P has followed Carter since day 1 and really knows him best at this point. I feel it is important for him to know all the latest details. He is genuinely interested in Carter and is actively trying to find answers. This may help him. There is a condition called Congenital Sucrase-Isomaltase Deficiency. Wonder if this is it? Who knows.
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