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!