I have to say, I was dreading today all week. With Gramma gone and Bill working, the boys were all mine for most of the day. I wasn’t sure how they were going to be, but it all went a lot better than I thought. It started off on the wrong foot – Trevor woke up at 3:30, 4:30 and then was up for the day just after 5:00am. Starting the day completely exhausted from lack of sleep puts you at a disadvantage.
Trevor took two really good long naps, trying to make up for the craziness of yesterday and last night. He actually was in a good mood. Brendan was awake for most of the day and played and played and smiled and didn’t spit up even once. He did 4.5 hours on the mist collar and then some HME time in the evening. He even sat in the dining room at the table and had dinner with the family.
The worst part of the day was that I have two very attached little mommy’s boys. And they both cry if I have to leave the room for any reason. If I have to go to the kitchen for meds or food or to get high chairs, etc. Forget going to the bathroom without Bill coming out to distract them.

We had our hands full. It wasn’t until this evening that we even took out the camera. It was just because Brendan thought Trevor needed a little payback. He invaded Trevor’s bed!

He played with his aquarium

He found Trevor’s paci

“Oh no! Someone has been sleeping in my bed!”

Boot to the head

Trevor thinks he will just unplug this weird invading robot baby

Brendan watches Trevor very carefully and likes to copy. Trevor has had lots of water lately, so Bill gave Brendan a little water bottle too.

He is doing so much better with his gag reflex. He chewed on the nipple enough to get water in his mouth and he did swallow some although most just ran out. We were impressed!

Please, please Trevor, sleep through the night!!!

We are so pleased that today went MUCH better than the last couple of days. Brendan was taken down to radiology around 9:20am and the procedure took about an hour. Anesthesia went well and the new port insertion was successful. That means no nasal tube and no face tape! As soon as he was back to the room, they immediately started feeds. We had to stay for a few hours to make sure everything was working right and that he was peeing.

At 1:59PM, we walked out the door!

I am too tired to elaborate too much about the new tube but it is different. Brendan is sleepy but happy and doing very well tonight. He got an extra thorough scrub in the tub and a trach tube change and he is sound asleep. Trevor was such a good boy in the hospital, but again he was severely overstimulated and barely napped so he came home super crabby. He is extra clingy to me today too, I think the truck ride home alone in the backseat really rattled him. He went to bed early and I expect to hear from him early in the morning.

I just have some cell phone pictures/videos to share today.

This was last night, Brendan was trying to help Daddy open his bag of Fritos. Those darn bags can be tough!

This was also last night, I call it Trevor’s dramatic rant. Something about this video is hilarious to me, I have watched it several times! I can only imagine the list of things he was ranting about.

Trevor and I brought breakfast to Bill at the hospital this morning. Bill was awake a lot overnight taking good care of Brendan, it was mean of Trevor to steal his bacon.

He shook it for a while and wasn’t sure what to do with it. A few tastes later, he slobbered it up good and handed it back.

This is Brendan after his procedure. He was pretty relaxed!

You can see the new tube in this picture, I will take better shots of it tomorrow.

Every Tuesday in the ICU, there is a book cart that goes around and the kids can pick a donated book to keep. Trevor picked a book for Brendan.

He was reading to his brother

In the end, all of the events of this weekend seem to have put us in a better place, but time will tell. We hope this new tube configuration works out for him and that it doesn’t pull out easily.
For all of the people that asked me to kiss the boys for them, they both got tons of kisses on tape free cheeks!

This is one of those days that hardly seems real. I feel like I should wake up any moment and find that it is one of my warped sleepwalking hallucinations!

When we left the ER yesterday, we were given the number for the Interventional Radiology dept scheduler and we were told to call first thing at 7am so that we could get Brendan on the schedule. So at 7am I called and learned that the scheduler doesn’t start until 8:30! Perfect, I left a message with a guy that asked how Brendan was as soon as I said my name.

8:30AM, Scheduler returns my phone call first thing (wow!) and says that she can’t do anything until the doctor sends an order for the procedure. I call the clinic and ask the NP to send an order. She won’t do it, and insists that Brendan needs to come in to the CVICU for an admission and then he can go to IR.
They worried that since he was throwing up all weekend, there was high risk for dehydration and he may need IV fluids. They had to lay eyes on him to make sure that he was OK before they just sent us for a new tube.
She preps his admission and they promise to call me when there is a bed available to bring him in.

1:00PM, Trevor finishes up lunch and we head in. We pack light and expect to be home no later than 6pm. It was quiet in the ICU, admission was just a formality. Brendan gets minimal monitoring and just waits. No IV fluids needed (no big surprise). IR is supposed to come get him at 3PM.

4:30PM, IR calls for him to come down. I stay in Brendan’s room with Trevor and Bill walks the huge walk to IR with Brendan.

5:15PM, Bill shows up with Brendan with no tape and tube!! This is where it gets good. I have to back up a bit.

Brendan’s port on his tummy has two openings. One connects to a tube that goes straight to his stomach. That is the G tube or Gastrostomy tube. The other opening has a longer tube on the inside that goes through the stomach and down in to the small intestine, and should end in the Jejunum. Hence they call it a J tube.
When the port was added, they were not able to push the J tube from the port in to its proper place. It takes firm manipulation of his gut and with fresh surgery, this wasn’t possible. So the J part of the tube from the port was left just coiled up in his stomach. Once his ostomy site was healed, they could attempt the placement again.

When Brendan got to IR and under the xray, they made a discovery that has left me, Bill and the doctors all scratching our heads. The J tube had left the stomach and was up Brendan’s esophagus! No wonder the poor baby was retching and refluxing. The only thing I can think of causing this is that when the ND tube came out, it must have lifted the other tube along with it.

In order to fix this situation, they are going to have to remove the whole little port and pull that tube out. (these ports are made for removal, they are designed to be changed out every six months, as long as the surgical opening has healed). Brendan healed fast so we hope it goes neatly. They will put in a new port and attempt to thread the new J tube to the proper place. The really bad news with this fix is that anesthesia is required and so it has to be done tomorrow. That means Brendan is sleeping over in the ICU tonight.
The silver lining to this chaos is that Brendan should come home with no tape and tube on his face, and a working port on his tummy placed where it needs to be for his growth and mobility.

We were so caught off guard and unprepared, but we do what we need to do. Bill called out of work for tomorrow and is staying the night. I brought Trevor home and gave him dinner and another bath and bottle and got him in his jammies. Then we had to load him back in the car and make another round trip to the hospital to deliver ventilator pieces and some supplies for Bill’s overnight.

Trevor ended up getting to bed just a tiny bit later than normal. He is sound asleep after a busy day. Bill and I aren’t going to sleep well, so much wondering about how tomorrow is going to go, and hoping that this will be the only night that Brendan is away from home.

I still managed to capture some pictures.

This was Brendan waiting the hour in the admissions area to get checked in. Yay paperwork!

He had no idea what was in store with the visit. In the end, it was a surprise to us all!

Trevor was such a good boy. He really likes getting out in his stroller.

Trevor visits the 5th floor pig while we wait for IR to get Brendan

Brendan just casually hung out on the bed playing with Bill until it was his turn to go downstairs.

I miss my big B and little B tonight. I hope that I have a better story to tell tomorrow!