Set Backs

Just when you think you know everything there is to know about Hirschsprung's disease and all the ways it effects your child's day to day needs, WHAM! It hits you, smack in the face, that you know nothing.

Malachi suffered a set back this past week. A really bad one. The worst part about it was that neither Sam or I clued in until 12 hours later. Have you ever watched your 16 month old violently throw up every 10 minutes for hours and hours? It's not fun. Basically, once enough bile collected to alert his system that there was no room in the inn, bam out it came.

He started to improve after we finally clued in and increased irrigations  The biggest trick was being able to do an irrigation at all. There was never a window long enough between heaving his insides out to do one! We finally just double teamed and prayed like mad that we'd be able to make it work without the choking, gagging, near death experiences coming back to haunt us from his younger days (that's funny, like he's so old now at 16 months!).

It's just not a picnic to go through this stuff on a daily basis. Especially when you start thinking you are pretty hot stuff and have it managed and "covered". Yeah, that's funny. It was awful seeing his mouth and lips all dry due to dehydration. I can't imagine what it would be like to live somewhere that you see it on a daily basis because there just isn't enough food and water to be had.

I am so grateful for enough food and water, shelter and supplies to care for my family and all their needs, and most especially, I am thankful we have Dr. Aiken by our side through this all. I wish my mistakes didn't have to be so traumatizing for my little guy.