Wednesday, January 6, 2010

NO strictures!

Jonah had his Upper GI Study (Barium Swallow and X-rays) today. I felt like I didn't want him to have to go through all of that and then come home and have to go through dressing change. So Matt and I got up at 6:00 am (after Matt had been fighting to get Jonah back to sleep since 5:15), took our showers and got completely ready except for changing our clothes. We got Jonah out of bed at 7:00, put him in the bathtub and finished dressing change around 8:30. We were at the hospital by 9:00. They took us back to the x-ray room pretty quickly.

Nurse: "Take all his clothes off down to his diaper and socks."

Me (in my head, of course): Socks? SOCKS? This child is bandaged from head to toe. These are NOT socks.

Matt looks at me, all "what the heck" like. I just roll my eyes and start undressing Jonah.

Me, looking at the flat hard board contraption with STRAPS under the x-ray machine (out loud this time): "Um, we can't put him in that."

Nurse: "I'm just getting it ready. The doctor can decide that. I'm just doing what they told me to do. That's what I get paid to do. Follow directions."

Me (in my head): Well, I'm about to tell you what to do, and it's my money you're getting paid with, so you're about to be following some new directions.

Doctor enters: "So what's going on with the little guy?"

Me (in my head... okay from now on if it's in italics, it was in my head): What the crap? Has nobody read his chart?


Me: "Well, he has this skin condition called Epidermolysis..."

Doctor nods his head. He's read the chart after all.

Me: "Oh, well Dr. S wants to make sure he doesn't have any throat strictures."

Doctor: "Will he take the barium by bottle?"

Me: Yeah, sure. Maybe when pigs fly.

Me: "I don't know. He usually only takes a bottle when we're at home, I'm holding and rocking him, and he's half asleep."

Doctor: "Yes, I read in his chart that he has to be asleep to eat and that Dr. P wants to put in a g-tube. He needs a g-tube."


Me: Um.... WHAT? Like you mean you plan to put one in right now so he can get this barium? What are we even talking about?

Me: "No, we decided that he DOESN'T need a g-tube. Dr. P wants to wait now that he's gaining weight."

Doctor: "Oh, that note wasn't in there. So he DOESN'T need a g-tube?"

Me: Ay, caramba.


Doctor: "Should we put an N-G tube down?"

Me: How the heck should I know what we should do?


Doctor: "I mean, it would only go down once and it would be well lubricated. Do you think we should try the bottle first? I've tried paging Dr. S several times, but he's not answering. Should we really put him through all of this just to make sure there's nothing going on?"

Me: Um... communication breakdown much?

Me: "I don't know. I want Dr. S to be making these decisions. I don't know why we're doing this except it's what he recommended."

Doctor leaves and finally gets in touch with Dr. S.

Doctor: "He says to try the bottle first and then do an N-G tube if that doesn't work."

Me: "Okay."


So Matt and I put on the radiation vests, but instead of being able to hold and feed Jonah and THEN do x-rays, they strap him down on the table (using lots of padding and with our supervision) and THEN expect him to take the bottle.

Me: About that when pigs fly thing... yeah, they're going to have to fly, turn purple, and sing show tunes before he takes this bottle.

Jonah: (Flailing head back and forth) Waaaaaaaaaaaaaaaaaaaaaaaaaaaaa!

Me: What's that Jonah? You are exhausted, starving, and strapped down to a table with a huge, scary machine over your head? Here, have some chalk.

Jonah vehemently refuses bottle.

Nurse: "Could we try a syringe?"

Me: That's the first intelligent thing you've said all morning.


Me: Yes, please. Let's try that. (thinking she would bring me a 5 ml syringe or something)

Nurse brings in a 30 or 40 ml syringe, fully extended.

So now I am trying to hold the strap off his forehead with one hand to prevent blisters and somehow get the barium into his mouth maneuvering a very long syringe with only one hand. Matt can't help because the x-ray machine is in the way, and there's just not enough room at the top of Jonah's head for both of us.

Me: Lots of choice curse words.

Doctor: Okay, we're done.

Me: Oh, thank you, Sweet Jesus.

Doctor: That's it we're done. And I didn't see any strictures. Everything looks good.

Me: Seriously, thank you, Sweet Jesus.

I yank Jonah up while Matt takes off his vest. Jonah's face is covered in barium, but other than that, there's not a mark on him. (Well, you know, except for all the ones that were already there, of course.)

After all that, we found a dark waiting room and fed Jonah. He ate an entire bottle without struggle and immediately fell asleep. Poor thing. We then waited for about 45 minutes for our 10:45 appointment with Dr. S. I LOVE Dr. S, and it was a good appointment.

We didn't get home until 12:30, so it was a very long morning. I fed Jonah again around 1:00, he had a big ol' gusher, I fed him a little more, and he took a two hour nap IN HIS BED. I was able to take about a one hour nap of my own. Maybe those pigs can fly...


We put him to bed early tonight because he was just exhausted, but he had another HUGE gusher (about six ounces), so we had to clean basically his whole floor with carpet cleaner and start all over again. Sigh.

But now he's in bed, and I'm soon to follow.

Kathryn said, "How do you feel after your nap?"

Strangely enough, STILL exhausted. Go figure.

** Disclaimer: I don't think the nurse or doctor did anything "wrong" in this situation. And those were just my thoughts at the time. They did a fine job and only wanted to do what's best for Jonah. I get that. I was just completely stressed out and wished they had already known about Jonah and figured all this stuff out before hand. I'm not hating on anybody, so please save the dirty comments and emails and the "You're not a very good Christian" comments for another day. Thank you. **
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