Today started out with a bit of drama!

This is Brendan’s feeding tube on the kitchen counter.

The button is the part that was on his belly, the balloon is the part that was in his stomach that holds the whole thing in place. The long tube goes through his stomach and in to his intestine. Or it did until the food line got caught in the recliner chair. POP! Out comes the whole contraption.
In the past, we would have been crying because placement of this tube has to be done in interventional radiology at the hospital and we would have been packing our bags.
But since Brendan has done super super well with food going to his stomach, we were able to put in a new button at home (one that does not have the length of tube past the balloon).
POP! New button in place and all was well.
We were waiting for the day that we could change this out. The new button is so much better. It is smaller, it can be rotated to be cleaned. The old button was leaky and held open the pyloric valve in his stomach with the long tube. Hooray for accidents with happy endings.

Trevor slept in and missed all the fun. He woke with a little bit of an attitude.

It was 18-month checkup day at the pediatrician’s office. We were in the Dr. Seuss themed room today.

Brendan is feeling slightly better again today. We are slowly making our way back to healthy.

Trevor is filling out the survey about development.

The doctor said that they were both amazing. He says that Brendan’s lungs sound beautiful and clear.
We will get the follow up chest xray on Friday to be sure everything is improving.

18 month stats:

Brendan – 33 inches tall, 25lbs 7oz, 19.5 inch head
Trevor – 34.3 inches tall, 25lbs 2oz, 19 inch head

They didn’t get shots but they got a TB skin test and came home with a bandaid on their arm. Brendan kept trying to shake his off. Trevor just picked his off.

Trevor and I ran to the store because we were almost out of milk. Trevor has these new faces that he makes for me that are quite funny. He has one that is a “yeah, right” look, he has a very angry scowl that he used on the nurse with the needle today. Then he has this one, the “I don’t want to be here” grumpy face.

I have to try to catch the angry face because it is a real award winner. He is all full of attitude lately!

Today was a piece of cake!! I had some little drinks with umbrellas and put my feet up, and TREVOR did all the work for me!

He got in the mail and supervised the collection of the garbage

He moved out all of the oxygen tanks for refills

He moved Brendan’s crib out and swept up all the dog hair

He cleaned the counters

He took care of Brendan

He kept Brendan’s wires all untangled

He cooked dinner and fed himself some mashed potatoes

Brendan says, “If you believe all that malarkey, I have a bridge to sell you”

“I am outta here”

Truth is, we were all very busy today and Nurse Jen was here taking great care of Brendan. We had a bit of a scare last night as Brendan’s sats continued to drop. But some vigorous CPT (patting chest) and holding him upright and he finally slept deep enough to allow the vent to do its job. He fights it otherwise. His numbers recovered enough that we stopped thinking we were about to head to the ER.

He still had crappy numbers today, but you wouldn’t know it if the oximeter was turned off. He rocked PT today, played, laughed, climbed and threw up a lot less. He had some OT fun too. We go to see the pediatrician tomorrow for his 18mo checkup and follow up on this illness.
The pulmonologist has ordered ventilator during naps and overnight until we see her again on the 24th, and she prescribed a steroid burst for 5 days to help his immune system battle this infection. He still gets breathing treatments and antibiotic.
Once again, we all miss hearing his voice. We hate obsessing about those little glowing numbers on the oximeter and staring at them with all of the power of our wills to get those numbers to improve.

Brendan showed improvement today. He was more interested in playing, he crawled all around the room. He laughed at his brother. His numbers are still bad, but this is kind of how it went last time too. A few more days and he should be better. We are already scheduled for the 18month checkup with the pediatrician on Wednesday, and he will be ordering a follow up chest xray to check out a suspicious spot and make sure everything is healing properly.
He still has lots of dripping and drainage and it makes him throw up, especially when he gets up from sleeping. I am not coping with the vomit well, Bill has been a hero helping in that aspect.
No matter what I try to do, he always seems to deliberately barf right down my shirt.

It was Sort and Sanitize day, our game of Inventory Undo with extra cleaning.

Brendan loves his “thumb trap” toy

What you are seeing on the floor is a puddle of stomach bile, formula, and mucus. Brendan managed to open the medicine port on his feeding tube and so the contents of his stomach slowly back up and leak out. He was more than happy to swish his feet and splash in it and spread it around. (hence the sort and sanitize day)

Brendan hides out in the toy box. He tried to climb in all by himself.

After work, Bill did some work outside and cleaned up all the tools and debris on the patio. The boys were highly interested.

They love the Daddy time they get in the evening. Trevor even runs to him and says “Daaa”.

Tomorrow is busy Tuesday with PT, OT and oxygen refill. I am sure they will go easy on Brendan.