Sunday, June 12, 2011

Monday Morning Fun

Tomorrow Dave is taking the morning off.... we are going to load Max into the car... pack a bunch of food... and...... wait for it....

Take Max to the hospital for an upper GI. Jealous aren't ya?

I requested the first appointment of the day... I got a 9:30am appointment. I said, "no I need the first appointment." She said, "It is."
Since when is 9:30 am a good time to start seeing pediatric patients?? Small humans are up at the crack of dawn. And if you don't feed them right away... well, things are gonna get ugly. Well, for some reason, they said no eating before the Upper GI. Why?? There will be no anesthesia, he's had Barium before- he's not allergic. When he had it done at 13 days old, he wasn't nothing by mouth for 8 hours. Ugh....

This isn't going to be good.

We've done a LOT of prep work for this glorified xray tomorrow. We went to see the Gastroenterologist. I've talked and emailed with the Child Life Specialist several times. She took pictures of the hospital for us. She started at the front and took pictures all along the way and through the procedure. She emailed them to me, then I printed them, laminated them, cut them, hole punched them and put them on a ring. It's Max's Tummy Picture Book. And he loves it.
After Max started school, his therapists and teachers discovered that like most autistic children, he does very well visually. Pictures, especially real pictures- not drawings or animations, get his attention and keep it. Something about them calm him and give him more of an ability to cope with what's coming next. They are like a little kiddie Valium just for Max. They have seriously changed life around here!
So anyways, we've been going through the Tummy Picture Book with Max several times a day for over a week. He already has it memorized. Kinda funny. When I was changing his diaper the other day he was mumbling to himself and I heard him say, "go down hallway. Turn corner. Go to room number three. Get tummy pictures here."
On Thursday, we went to the hospital and met the super amazing Child Life Specialist that has been working with us. She did everything right. She wasn't up in Max's face, she let me call the shots, and she knew not to push Max too far. She knew it was important to take little steps and have him leave on a good note. So we went for our tour, and used our Tummy Picture Book as we went. He was definitely nervous but I think it will help him prepare for tomorrow.

The other big issue is the barium they use for the Upper GI. For those that don't know what an Upper GI is- it's basically a live action x-ray. The person takes a drink of this barium and the radiologist watches while goes down the esophagus and into the stomach. They will then watch for a very short time to see if any backs up into the esophagus- or if he has any reflux. They will also get an idea of whether or not his anatomy is normal.

Really, this is no big deal, for most kids. I'm not crazy about the extra radiation by any means. But it won't be an issue if he won't even drink the barium. Max does not drink anything but water and strawberry banana smoothies. He used to drink rice milk but just up and refused it one day and won't drink it since. If you offer him something else, he flips out. There is screaming, tears, arching and hitting. Thankfully, I've realized when he does this, he isn't being a brat. His body doesn't know how to regulate new sensory information coming in, and just the thought of something new- a new taste, makes him shut down.
So his therapists and I have been working on getting him to drink new things. This has involved small paper cups, small little straws and many wasted boxes of juice and rice milk. He will take small drops of a new liquid off of a straw, which is a drastic improvement, but won't take it out of a sippy cup. So hopefully the radiologist will allow us to mix the barium with his smoothie. I don't know why it wouldn't be ok. But nothing is ever as easy as it should be...

So wish us luck. After we get through this, a few weeks down the road, he has to have an Upper Endoscopy with Small Bowel Biopsy to find the cause of his continued reflux.


LauraJane said...

Sounds like a fun-filled Monday morning... :|
Will be thinking of you and sending you good thoughts for the easiest day possible tomorrow. And geez, 9:30 is a long time for an adult to wait, let alone a child.

Kelly said...

Goodness, good luck today! What a day. I'll be thinking of you and Max.

Natasha said...

OMG I'm so sorry! Those barium drinks are no fun :( I had to drink the "smoothie" for a CT scan before and I just have to say they are wrong for calling that crap a smoothie!! I hope they let you mix it so he gets a decent tasting drink this morning.

I'll be thinking of you guys and Max- I hope the day goes ok!


Mary said...

Oh, geez! I hope all goes well today. I'll be thinking about you all!


Good luck and I hope that everything is okay! Poor little guy!!

Deanna said...

Hope everything went well today :)

ccc said...

I am reading this Monday night, and I can only imagine how stressful it may have been. I hope you were able to do the test and not have to reschedule and I hope Max drank the barium. I cannot even imagine my Ben going through that(he seems a lot like Max in your descriptions). A year ago we had to do a test where they put a camera down Ben's nose to look at larynx and I just had to manhandle him.
I really feel for you and your husband since you still have one more test to go.
I'll be praying for success and good diagnoses.

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