So the frustration continues......
Grayson had an apointment yesterday with a program called "Kids Eat" which is to evaluate and help with feedings of children that have some complications. Grayson has been aspirating when he feeds, so they wanted to add rice cereal to thicken his formula to help. So yesterday afternoon Grayson had three feedings with rice cereal mixed in and then an all too familiar sight occurred last night as his stool output stopped. So we started looking online (Cincinnati Children's hospital website is where we get a lot of info) and found that rice cereal is a big No No with Hirschsprungs disease. I guess that explains why his stool output stopped. I can’t comprehend why they didn’t mention that to us. For Grayson's final feeding last night we decided to just go back to the regular bottle with no rice cereal, well of course Grayson wouldn't take it. So now he wouldn't eat and we were worried we would have to have his small intestine irrigated at the hospital. So then this morning, Grayson went the opposite way and started “dumping” he has had almost four days worth of stool output today, so if we can’t get it under control he’ll be in the hospital because he’ll be dehydrated. Val went out this morning and got some oatmeal cereal (that is OK with Hirschsprungs) that we started mixing in with his formula. So we need to keep an eye on this.
I continue to get so frustrated with so many people in the medical profession. I know we are going to have many hurdles throughout Grayson's life, but it drives me crazy when I am not informed of things I should be and have to find information myself after the fact.
Pictures are adorable - I see he's eating with a spoon. Like I said to you, you will have to question everything and even then you will still get misinformation. It's sad and unfortunate but there are too many medical people (as you have seen) that don't have all together and you pay the price.
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