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)

I guess it is tradition. The day before Gramma is set to leave, something dramatic has to happen. Any time we have a new nurse starting, Brendan does something dramatic. So put those two together and he had to have something REALLY dramatic to do.

So it was time for his ND tube to come out! To be fair, it wasn’t Brendan’s fault entirely. He had been tugging and peeling on his tape as usual and it was a bit loose. Then I got the tube caught on the handle of the recliner chair and it pulled hard enough to just slide out about 6-8 inches. It was too far to be able to put it back safely.
So it was a chaos afternoon trying to make decisions about what to do. We talked to several nurses and they talked to the doctors and we all agreed to try to use the new belly port directly in to his stomach.
We are HOPING that the latest developments will help it work this time. No tube in his nose and throat to gag him. No ostomy to slow his digestion. Stronger core muscles. We just have to hope that his reflux is improved or a trip to the hospital is in our near future.

Super fresh cheek after removing the tape and tube:

You can watch the video of the final tube removal. Poor Brendan had been very upset and he was sound asleep through most of it.

What a day!

We started a slow rate of pedialyte and he seemed to handle it well. After about 3 hrs of stomach feeding, he started to feel some discomfort and was passing a TON of gas. He got pretty upset but got through it fairly quickly.

Trevor was very happy to see his brother without tape.

Just look at this happy scoot!

It was all just for being able to get a picture with Gramma with no tape on his face! He got his HME and some cute clothes for a few cute photos.

Wouldn’t you know it, Gramma tried to pack both boys in her suitcase!!!

Trevor’s already complaining about the leg room, and Gramma tries to tell them they will need to be quiet through security!

Tonight, Brendan is still doing OK. It is too early to tell if this will work, his little tummy is making all kinds of noise. He poor cheek is very bright red and angry. Hopefully he will have a good night and feel good in the morning.

Gramma will be headed to the airport at 7am. It is hard to believe another visit has come and gone. Brendan’s success and progress through this surgery and recovery would not have gone nearly as well without her help, and we are all very grateful.