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!

It was a hell of a day. Gramma needs to just fast forward to the end of the post for the cute pictures and ignore the rest so she doesn’t feel bad about being at home.

Brendan slept nicely through the night and we were encouraged that things were going well. Then this morning he had several issues with spit up but we weren’t going to give up on him too soon. In the mornings, he always has a lot of coughing and it could just be something we could work around.
Then he spit up more. Then he spit up with force. Then he spit up all down himself, Bill, me, the bed and the chair several times and I just could not take it any more. Maybe it was the lack of sleep, maybe the sharp smell of bile and sour formula. I could not picture dealing with this every day on top of everything else.

So we made the choice to pack him up and take him back to the hospital for his ND tube to be put back in. Of course it was a Sunday so the clinic was not open. We have been told all this time that on the weekends or after hours, we needed to go through the ER and that they would be able to put down the tube and just verify placement with an xray. “They do it all the time”, and “It is simple”. Well we learned the hard way that that is not true. We wasted a ton of time in the ER just trying to explain what we needed and answering too many questions that had nothing to do with our visit.

The doctor in the ER was very good, she contacted the surgery group to see if it had been enough time since the tummy port was added that maybe the GJ could be attempted again. But they said no way. (long shot, but had to ask). So the nasal tube and face tape needs to come back for a while longer. But it has to be done in Interventional Radiology… and they said there is no way to see Brendan today, we have to call in the morning to see if we can get on the schedule. And then they wanted to ADMIT Brendan to the hospital to wait so they could give him IV fluids. We vehemently disagreed with that plan and said that we will be sure to get enough fluids in him and would bring him back if there were any sign of dehydration.

So we packed back up and drove home with nothing accomplished. 🙁 (can’t wait for the bill!)

For the rest of the day, I held Brendan on my lap. Not sitting him upright to put any compression on his tummy, keeping him elevated, and keeping him from crying or coughing made it so he did not have any reflux or spitup. He went hours and hours playing, smiling, and laughing as long as I held him or he could sit in his high chair and play with his copter. As the evening approached and he had gone almost 8hrs without spit up, I started to second guess myself and our decision to take him in tomorrow for the tube.
But then Bill had to leave for a short time and I had to take care of Trevor too. Brendan got so super mad and reminded me why our decision is the right one.

We can’t hold him back from doing his PT, working on his mobility, playing on the floor, and sprinting. He can’t be continually interrupted with the need to clean him up which makes him mad which leads to suctioning which starts that downward spiral. So we have to go to the hospital again tomorrow and hope that things actually work out.

On to the pictures..

This morning, Trevor was in a great mood. He was having a little read in the jungle while he did his jungle business.

Trevor is proving he is not bald. Look at all that hair!!

No paparazzi!! Brendan was not the least bit thrilled to be in the hospital

Trevor will take good care of him

Just in case things weren’t stressful enough coming home, Brendan had a little surprise for us when we took him out of the car. The carseat pad is in the laundry.

Both boys took a nice long nap when we got home, and woke up in a good mood. Keeping Brendan ultra happy today was the goal. It was exhausting, but it worked to keep food in him and not worry about dehydration.

Trevor skipped his afternoon nap because his schedule was off, so he got a little mad tonight. Of course the fastest way to make a mad baby happy is to give them something that will either put the baby or the object in peril.

Pictures may be worth 1000 words, but they sure can tell tall tales! Just look at these little angels!

I am not even sure how tomorrow is going to work or what time we will be able to get in to IR for the tube. Like every other day, we will just take it as it comes.

Here we go with another “up all night” night. Trevor had better sleep past 5am in the morning, he only took two 15 minute naps the whole day and was otherwise a spazz. I can’t believe his energy.

Brendan was pretty much a spazz too, he was pretty happy all day. It is very weird seeing his little face now. When he has been napping and I haven’t seen him in a hour, I still almost do a double take at how cute he is and how different his little expressions are.
He had one major vomit early this morning but it was triggered by thick secretions around his trach tube. He had a handful of other spitups but they were really small. If he stays happy and his heart rate is good, then we are on the right track. No more vomiting would be ideal!
I have been worried about it all day long, it is so hard to know when you are making the right choices with him. There is a fine balance between pushing him to make him strong and recover and making him suffer. Then there is keeping him comfortable and over babying him so he never improves.

He did do an epic sprint off the vent today on the mist collar. It was so long we lost track of it. His numbers were so good and he was happy so we let him just keep going and going. He is sound asleep now!

He sure does like to play, and he loves this helicopter.

He was smiling at everything this afternoon

I told him he was a “camera ham” and it made him laugh. Now any time I say “camera ham!!” he giggles

Even though his naps were nearly nonexistent, Trevor was in a decent mood. He was very clingy to me today though. He was extremely active and played a long time in baby jail and played with his brother too.

He loves his straw cup now. He drank a lot of water today.

He reads the labels on his puffs very carefully, and even checks the expiration date. 🙂
(All the background noise is Brendan’s mist compressor)