I managed to get to the hospital by 5:30am today, and Brendan was awake. He shot me a couple of smiles as the nurse did his assessment. It did not take long for whatever his morning issue is to start to bother him yet again. He got flushed red and very sweaty and his heart rate started to climb. Fortunately I was able to hold him and comfort him and he did not require sedation. My being there with him coupled with his increase in Klonadine allowed him to recover from the trouble within about an hour.
I continued to hold him most of the morning and finally got him settled in to bed to start his vent sprints.
The top thought on this morning mess is still antibiotics causing intestinal distress. He has been on the antibiotics 19 days now. The last of the cultures were due back today and the antibiotics were being discontinued. Tomorrow morning will be a good indication of whether or not it makes a difference.

When his head gets all sweaty, the stickers get loose and he finds something new to pull on!

Trevor had a good day hanging with dad this morning. Then, he had a double aunt-attack. Aunt Heather and Aunt Beth are in town only for the weekend so they had to get in a little Trevor time.
We got excellent BBQ for dinner (thanks Heather!!), and Trevor joined us at the table. He was such a good boy and behaved so well at the table while we all ate.

Brendan wanted to do an instant replay of yesterday. He started at about 5:30am this time and just got very upset and was difficult to calm. He was sedated again and by the time I was able to get to the hospital, he was out cold. I plan to go in tomorrow morning to be there at 5am to see if I can keep him from melting down again.
It is unknown what is causing him to be upset, but the leading guess is that is intestinal. The antibiotics should be finished and then we will see if he still has these episodes.
He still did a 3hr sprint on automode settings today and did very well. I held him for a few hours before I had to leave and again, he was just starting to come off sedation as I was walking out the door.

He looked so tiny and funny in his propped up bouncy chair in his giant crib. He is sitting up so high just in case his agitation was due to a “glenn headache”. Gravity helps his circulation.

Just starting to peek out after I got him settled back in his chair. He really liked sitting in the rocking chair with me better!

This is for Aunt Heather’s question – yes his eyebrows really are very blond. They look the most pale in the natural light coming in from the window. Sometimes the camera really exaggerates it. The bumps above his eyebrow are just a bit of heat bumps (sweat glands) from being a sweaty baby.

Poor Trevor had to go see the doctor for his 6 month checkup and lots of shots. (He is 27in long an weighs 17lbs 6oz now!) They gave him two shots in each thigh and one oral vaccination today. He had an epic meltdown and then has felt pretty sore and tired all night. He still had time to enjoy a quick video chat with his aunt, uncles and cousin.

Trevor really likes the crinkle paper at the doctors office, until he remembers what happens on said crinkle paper.

He was dancing and kicking like crazy to make the paper crinkle, I only caught the end of it.

Sleepy baby with his band-aids on his legs. One is Snoopy and the other is Captain America.

Bill and I are feeling better, still dealing with general fatigue and a nagging cough. Grandpa Jack is still comfortable and will have lots of visitors this weekend.

And time marches on!

Brendan had a good night, but a terrible morning. I was told that at 6am he woke up very agitated and uncomfortable and could not be settled. After his usual meds and an hour of trying to calm him, they decided that he needed something more. The Precedex (sedative) IV drip came back to give him relief, as well as an increase in klonadine. Even when he fell asleep, his heart rate was still very fast.
Some blood work showed elevated white cell count and higher procalcitonin levels – indications that he may still be dealing with an infection. He has been on antibiotics for weeks, but maybe not the right ones? One was added this morning. They sent some cultures again for testing. In 48 hrs, if it all comes back clean, they will discontinue the antibiotics.

I got there today just as he was settling down and he stayed calm and sleepy the whole time I was there. They turned the dex off at 8PM and he has been good for the night nurse so far. Whatever was irritating him seems to have passed for now.

Brendan’s tool box came in today and Bill went to go pick it up. He gets it home and the neighbor helps him carry it in the house. Excited unboxing and…. giant crush dent across the whole top center and the top drawer would not even open. They either crushed it with a forklift in the box or dropped something super heavy on it. Who knows. Back in the truck, back to the store it went. They have ordered a new one that will be in next week.

Trevor was a good boy today. He is definitely showing signs of teething, I keep waiting to see the little teeth starting to poke through. Maybe that is what is getting to Brendan too?

It was a beautiful cool evening as the sun went down today. Trevor and I went and sat out on the patio for his dinnertime bottle. He loved being outside.

The fresh air was too much for him!

Once the toolbox fiasco was done, we took Trevor to see Grandpa Jack. The hospice house is treating him well, he was comfortable and said he’d had a very good turkey dinner. He was thrilled to have Trevor visit. Even though he couldn’t see him well, he could hear him and held him.