Today was the day that we knew would happen eventually but hoped it wouldn’t be any time soon. Brendan managed to throw up so hard that his feeding tube came up from the back of his throat and out his mouth. The problem with his feeding tube is that it runs down his nose, through his esophagus, through his stomach and past the main stomach in to the duodenum. This way, he is unable to reflux or throw up his formula. Placing the tube this way requires an xray to verify that it is in correctly. The feeding tube coming out on a Sunday when the regular clinic is closed means a trip to the ER for reinsertion and xray.

BUT… if his tube is just up his nose, through his esophagus and in to his main stomach, then we can put that in ourselves at home. We can check placement by pushing a small amount of air in to the tube and listening with a stethoscope to hear the bubbles. It has been over 6 weeks since he has had anything in his tummy at all and the plan has been to try it when Brendan made it necessary.

So we started by putting a new tube in his nose, just in to his tummy. We gave him time to rest and then started him on pedialyte (orange flavor!) at a super slow rate. After each couple of hours, we increased the rate just a little bit. So far all day, he has not shown any signs of reflux, he has not had any vomiting, he has been in a pretty good mood. If he can move to just tummy feedings, this is a HUGE HUGE HUGE step in the right direction for him in terms of his eating. If he has trouble over the next day or two, we will be going back to the hospital for the tube to be put deep again.

Trevor seemed better today. He had a few crabby baby issues, but otherwise he has been a lot more agreeable and happy. His first tooth is so close to popping through so that bugs him too. Hopefully each day he gets better, his screaming wakes up his brother and makes him cry too!

We took so many pictures today, I couldn’t choose which to use. So there are too many! I keep telling Mom each day that we can’t possibly outcute the cuteness of the day before’s blog pictures but every day we still do. I think the loyal minibat followers are spoiled by too much cuteness and maybe I should cut back?
I had to include all of the Brendan pictures, especially when we can see his whole face with no tape or tubes!

Trevor had to come help comfort his brother and see his real face after the tube came out.

Gramma held Brendan while Bill and I prepped everything for the replacement.

First Brendan got a relaxing bubble bath.

“My pincher fingers are confused, there is no tape to pick!”

Eating the washcloth

He even got to play some turtle kicking game, he is getting better at it all the time

Trevor told him you have to make a really sad face when you get out of the tub

Trevor really was a good boy today, he is just too cute chewing on his cold wrenches from the fridge

Brendan’s new tube went down as smoothly as it possibly could go, and the boys had a little nap together.

Three crabs on a new play rug!

Trevor doesn’t usually have tape on his face, but his little expressions are so cute, I can’t leave any of these pictures out either!

Trevor is getting up on his knees better on this rug, he has some traction. He was feeling bold and was going to take on the yellow crabbie.

Yellow crabbie had backup!! Trevor gets taken out with an ambush attack!

The crabbies all make up and spot Trevor for some big boy sitting time.

Brendan wakes up and decides to show off his tiny little tooth

The base tape is on his cheeks to have a tape mustache back on, but so far he has been good and has not needed it. This tube isn’t as critical about being pulled out, so we won’t mustache him if we don’t have to.

Brendan plays Words With Friends against Gramma, but the game said that “hmfgroq” is not an acceptable word.

He has to think harder this time.

Happy Birthday to Grampa Dusty in Illinois, we hope you had a nice birthday dinner!

After staying up really late for the first half of the night shift with Brendan, I was able to sleep in while Gramma and Bill covered the boys this morning. Getting out of bed at 10:30am really throws off the day, it went by way too fast!
We had a slightly better Trevor today. Hopefully, he will continue to improve. He goes to see the doctor on Monday either way. He is definitely still dealing with a lot of pain and discomfort, but we had a lot more sweet, cute Trevor with smiling today.
Brendan was also in a great mood for a good part of the day. Saturdays are always bad because we make drug changes on Fridays. He is noticing the changes and cried more than usual. He ended up being held quite a bit today.

Since he was feeling happy, he got to try out something new!

We took his high chair out of the box and set it up for him, so he has a new place to sit during the day and play. For now, he got to look at a shiny red can!

Trevor says, “Wait a minute! That doesn’t look like peas or carrots!”

Trevor still has the jungle to himself for now.

Brendan cries until someone picks him up, and then he always flashes a big smile.

“I have this game mastered,” says Brendan

Through one of his rough spells, the only way to get Brendan comfortable was to sling him in a hammock like contraption and lay him on his side.

Trevor keeps working on his big boy sitting. When he feels good, he loves to play this way!

Brendan had a whirlwind day today and handled it so very well!

Trevor wished him luck this morning and we left the house

First stop was to see his GI surgeon. The doctor thought he looked great and is ready to “take down” the ileostomy! Brendan will get a contrast study of his colon first to make sure there is no damage or scarring that would prevent it from working properly once it is reconnected. Once he gets that test done, he will get a surgery date – possibly some time in July!!!
As excited as we are for this progress, I am nervous and not looking forward to more time spent in the hospital. He will go back to the CVICU for recovery and will have to spend 5-7 days there, possibly longer if he does not start pooping properly.

Next stop was the cardiology clinic for some blood work. We got the test results back this afternoon already and all of his numbers are excellent! His supplement schedule is being modified now that he has cut back on diuretics, so four doses of medication have been removed from his schedule.
He stopped his Prelone all together today after a very very slow wean. We will know in a few days how he will react, but so far his day has been excellent.

We had to breeze by the pharmacy at the hospital and get a big package of refills. Getting refills was a pleasant reminder that Brendan is going on being home for a month! When we got home, Brendan was exhausted and slept a good part of the day away. He was able to wake up, smile, and pick his tape.

Trevor had a very bad day. We are all worried about his little tummy. His pediatrician had us switch again to yet another formula. This new one is a super expensive hypoallergenic formula. The doctor is positive that it is a food intolerance, most likely to lactose. We just have to hope that he feels better soon.
He can’t go on like this

He is able to relax for short periods of time

He also can still have some smiley time. We want this sweet Trevor back full time.

Brendan still had energy for an hour and a half sprint. He misunderstood when we told him he was going to sprint. He thought he needed to run and run and run. He is working those legs so he can impress his physical therapist next week!

All that running wore him out!