After being up with Trevor for a while at 1:30am, Brendan’s nurse had to get me at 3:00am because his feeding tube was clogged and the pump kept beeping an error.
After messing with it, we were able to get the pump to push in pedialyte and then added formula a little later. It didn’t last though, the tube kept sticking and it was tough to push in water with a syringe.
As soon as I could, I called the GI doctor and they sent orders over to radiology and told us to get there asap. They all agreed there must be something wrong with the new tube.

Trevor is not allowed in the hospital and we had no help today so Bill had to leave work, pack up Trevor and drive us over to the hospital. He and Trevor then went back home so that he could give Trevor lunch and hopefully put him down for a nap.

Brendan had a good car trip, but he cried as soon as he saw the hospital building! We had to go sit through admitting which is not his favorite place either.

We got to IR and they took him back right away to look at what was happening and decide what to do. Next thing I know, they are wheeling him right back out. They found that the tube to his jejunum was a bit too long and it had pushed back up in to his stomach and created a loop. The loop did have a kink in it and that was causing the jams. That also explains why his stomach was so irritated and why he has felt so bad!
They reduced the tube length and repositioned it very quickly and he was good to go home!
Then we had to wait in the lobby for Bill and Trevor to come back for us!

So of course Trevor fell asleep in the car with all the driving and slept for 15 minutes. When we got home, there was no way that he was going to go down for a nap!
I even walked him around the block and he didn’t fall asleep. The sun was brutal, it is getting really warm here fast!
He was a bit of a crab later, but he did OK all things considered. He discovered he loves the ball now.

I will have to get a better picture, but Trevor likes to “mosey” around with his thumbs hooked in his diaper like it is a giant belt buckle.

Trevor has a new trick today

And some things never change (I was just trying to entertain him so I could cook dinner!)

All around, there was too much hospital today!! Surgeries were all successful so far although there is much recovery ahead. We hope the best for Grampa Dusty and Glenna as they worry about the next steps.

Today was much improved, Brendan still had a few spells of spitting up, but much less volume and yellow color. He was in a good mood too.
Trevor slept through the night until 7:30 – HOORAY! Sleeping in was nice.

We only had speech therapy today (usually fridays), and you can clearly see what Brendan thought about it.

He was much happier afterwards when he got to go play in his workbench.

Trevor has a keen awareness of the baby gate. He can tell from across the room if it is closed but not clicked tight. Saying “The gate is open” gets his attention too.

“I am out of here!”

“Oh no, he is escaping!”

“I will be right behind him soon!”

Trevor just went to get the scooter for his brother

It became Brendan’s personal mobility device for exploring the living room

He drove over to sort some letters

Ham face. I call it ham face because he is such a camera ham.

The #1 reason we have to keep the baby gates

The #2 reason we have to keep the baby gates

Brendan says, “Look, Gramma. I am ready to run on the couch”

Trevor is helping me cook dinner. He is such a good helper.

Can you spot what is wrong with this picture?

I always wonder half way through the day if I will have any pictures for the blog that night. But there never is a shortage of cuteness to share and I usually have to choose only the best!

Tomorrow is a big day for our families. Grampa Dusty and Glenna will both be having big serious surgeries. We will be thinking of them all day and waiting for only the best outcomes.

STRESS, today was full of it. Lack of sleep, fear of the unknown, toddler angst, and violent vomiting amplify the stress and we just don’t have a lot of reserves for coping.

We are still not sure what is wrong with Brendan. I don’t know if it is the new tube placement or the change in feed rate or the drug wean or maybe even a stomach bug. He had a decent day on the whole, but he had several spells of just extreme retching and throwing up a pretty large volume of mucous and bile. We put in a call to his GI doctor today and they just had us slow his rate down and said to call in 2 weeks. Of course the new tube procedure went so smoothly but now it is causing trouble, just like I was afraid of. I hate it!
I just played out in my head having to go back to IR to check placement or get it redone or ending up having him admitted for diagnosing the problem. Or even just having to pack him up again to see the GI doctor. It causes me great anxiety, but we just have to take it day by day.

Trevor is so strong and curious and stubborn and just wants so badly to explore. Keeping him locked up in the living room makes him so frustrated and he is just whining and crying too much. It doesn’t help that he was awake at 6am and has a little tummy trouble himself so he was especially desperate today.

Tuesdays are so hectic now with PT and OT in the same day. Plus, we had feeding pump issues and had to have the company bring us a replacement pump. Trying to participate in therapy and keep Trevor safe at the same time is enough to make me crazy and tired.

We waited to hear and worried about Grampa Dusty and Gramma. He was put through the ringer of tests today and now it is determined that he has a gallbladder infection and the gallbladder has to be removed. There are complications involving the surgery and hopefully we know more tomorrow.
Our frequent commenter Glenna is also waiting for an important surgery after a barrage of testing.
To make things tougher, they all got buried in snow today making travel very dangerous. We have everyone there on our minds and hope for the best.

You wouldn’t know by the pictures/videos that there was anything wrong. So I take a deep breath and focus again on the positive that I can find in the day. I love these sweet faces and will get up again tomorrow to do everything I can do for them.

This baby does not seem cranky at all!

It always helps Trevor to find something new for him to do. I found these rhinos in a drawer. From the stamp on the bottom, it seems that they were happy meal toys from McDonalds in 1998. They are pull-back/release racers and Trevor was captivated for a while by rhino racing.

And he ran them up and down manually too, like his trucks.

Brendan was too tired to do much for PT. He was still recovering from one of his bad spells. They leave him drenched in sweat and exhausted.
When OT showed up, we used our new strategy. When he started bawling, we just mostly ignored it and the therapist started to play with Trevor. She broke out bubbles and was catching them and letting Trevor pop them. Needless to say, Brendan got interested and forgot that he was too mad for therapy.

He loved popping the big bubbles and of course was thrilled with everyone clapping for him.

“Where did the bubble go?”

Silly Brendan

Once we find something that motivates Brendan, it is possible to get him to do his exercises. He did lots of nice reaching and propping today.

I decided to let Trevor try a little kiwi today for a snack. It was a very tart one, so I got the camera to see if he made a cute sour face.

Not even a flinch or a twitch! This kid likes his tart fruit!

Trevor doesn’t just wave goodbye when the therapist leaves, he gives her a “Live long and prosper”.

Brendan reached the peak of his silliness while I was getting his bath ready.

Getting the boys to bed was a huge relief. Brendan had his worst spell of the day tonight and Trevor was just frantic during the whole thing so we were ready to just explode.
Two peaceful sleeping boys and a long hot shower helped reset everything to tackle the next day.