Feeding Camp Day 23

Oh. My. Word.

I. Am. Exhausted.

You know those days that are coming to a close and you're just so thankful for tomorrow being a new day?  Yeah, it's been one of those days.  Thankfully it all went by pretty quickly.

Wyatt woke up at 6:30 this morning after not falling asleep until 9 last night.  We didn't need to be anywhere until 9 o'clock. I was so hoping he'd just know and sleep in.  No such luck.  Haha.  I'm not sure if he just woke up or if our call button randomly beeping a couple of times around 6ish made him stir and woke him up.  I know it woke me up.  lol.  Oh well, whatcha going to do?!?  (Besides tell the day nurse who can do nothing about it and promise that particular night nurse won't be back tonight.... she also walked into our outer room last night, flipped on the light and then asked if that's going to be a problem.  Wyatt wasn't asleep just yet, so yeah, it was a problem.  He jumped up and started telling her his alphabet.  I requested she not do that the next time she comes in.)

I feel like I sound whiny, I'm sorry if I really sound that way.  It's kind of how I feel.  lol.

So, Wyatt and I hung out until it was time to roll on out of here.  I stopped by the nurses station to sign some paper work that we were leaving the premises.  Got Wyatt loaded in the car, looked up the nearest Starbucks (Yea!) and there's a knock on my passenger window.  She forgot to hand me the paperwork that goes with us.  Good thing I love my over priced coffee or she would have missed us totally.

My venti frap!  

So good that I took 2 pictures.  lol. 

Playing in the waiting room.  Before being at OCH, I would not have let Wyatt out of the stroller let a lone play with the toys.  

Waiting to drink barium. 

Post crazy, crazy crying waiting on the right tools for this job.  Hoping he gets used to the machine being right over him.  

PTL for wifi! Super Why! to the rescue!

After an hour, we had to change it up a bit and get creative! 

Snuggles post "nap" before snack time.

He fell asleep in my arms during his breathing treatment. 

Sound asleep! 

Totally felt Jesus' love for me at Starbucks.  I ordered a grande frap and they upgraded it to a venti, no extra charge.  Whoop!!!!

We get to "Big Baylor" and get checked in and called back quickly.  We get into the X-ray room and didn't see the machine I expected to see.  So, what Wyatt had at 7 months old was a swallow study and this is an upper GI.  The swallow study is a modified study while the upper GI is the real deal.  Wyatt was not too fond of the big scary spaceship looking machine.  And then I tried to feed him some nasty barium.  Not. A. Happy. Camper.  Poor guy was so upset.... I totally don't feel like typing all this again, so here's my copy/paste from FB:

Okay, we are back at OCH. The upper GI was a mess. We got into the X-ray room and they had this giant cup of barium for Wyatt to drink. I just kind of laughed inside to myself about the quantity. Wyatt of course got very upset and refused to drink anything. I tried open cup, straw, syringe... Offering a reward (following protocol). He was way to upset for any of that. I asked for a slip tip syringe that could fit directly into his button, since they didn't need it to be swallowed. They brought me a syringe but not the right one. They called over to OCH for them to bring one over and his sippy cup. They brought the wrong syringe and the wrong sippy cup (no blame for the wrong sippy cup). Had to call back over for the right syringe and thankfully I finally thought of his extension tube! Most syringes will fit the extension tube! Finally, an hour later, we got the barium in Wyatt and the upper GI completed. 

Good news, his stomach has NOT slipped back up through his diaphragm. 

Everything moved into his stomach and on to his intestine as it should. The doc did say that when I pushed the liquid into his stomach, it went straight up in his esophagus (reflux) and that his intestine doesn't curve around in a normal fashion. That's very common for CDH kiddos. There's always a risk with his intestines getting twisted up (bowel obstruction). But no surgery required!! Praise the Lord! And thank you for your prayers.

We missed lunch and OT but I got to feed Wyatt when we got back.

Remember me mentioning how much Jesus loves me, well, He still loves me that much but WHOA I got a nasty stomach ache.  I had to ask the tech in the feeding room to get me some water.  I wasn't sure I was going to make it the last 10 minutes.  The water helped some but we got back to the room and I got Wyatt down for nap as fast as I could and laid down myself. I feel asleep for a little while but unless Wyatt slept at the exact same time as I did, he didn't nap.  He was in his pack-n-play for 2 hours and didn't sleep.  I still felt crummy so I asked his tech if she could feed him dinner.  That should say something, I hate hearing how he does.  I want to see how he does with his eating.  Thankfully, she understood and I laid down for another half hour.  I also got to speak to our team lead about the frustrations of the day.  She explained the differences between the two GI test (which I'm sure I butchered earlier) and I got to express what would have made the experience be more "smooth".  Again, I felt heard and cared for.  She's the best.  For only getting 3 sit downs with food today, he still did a good job considering a week ago in five full sit downs, he ate the same amount.  :-)  

Thank y'all for praying.  I am so grateful he doesn't need another surgery right now.  Those are so emotionally difficult to go through.  Please continue to pray for less and less vomit.  We have a couple tricks left if it doesn't subside but hopefully he won't need those either.  

BEDTIME.