It is challenging to post about this week, it has felt like a month and I am not sure I remember it all.
Initially, Brendan seemed to be getting better. The bumps were going away. We made some plans for the week. Monday night, Trevor woke up in the middle of the night with that signature high pitched barking cough. I couldn’t believe that we needed a virus on top of everything else. He had a fever the next day but was doing alright and slept through with no coughing spells on Tuesday. I was ready with the mist pump on standby but he didn’t need it.
We went ahead with our plan for Wednesday night. It was the time of year for the Perseid Meteor shower. The peak of the shower coincided with the new moon so it should have made for a great view.
We dragged the trailer out to about a hour outside of town, hoping to get some dark skies. In the middle of the night, Phoenix still looked like the sun rising in the south, and the weather wasn’t cooperative.
It was still a nice spot.
The boys love to get away and explore.
This flat landing with the old corral must be a favorite stopping point for hunters. We found three bear paws/feet scattered around.
It was still awfully hot, and there were so many bugs. The boys didn’t tolerate being outside as much as usual.
They were catching beetles on their shovel. But the tiny gnats and the big wasps were too much, they wanted to go in.
He just wanted to dig.
There was a pretty sunset
I tried for a few hours to catch some meteors in photos. Even at its peak, there was a long wait between meteors. It was very cool to see, but I never had my camera aimed in the right place. Even so, Bill and I got to spend a few quiet hours together doing something new.
We all went to bed and everything was good. Trevor was doing fine. Then the virus caught up to Brendan. Bill and I had to take shifts staying up with him and we went home first thing in the morning. He seemed to improve during the day and we did breathing treatments and mist pump for him. Thursday night was the worst though, and I had several moments where I debated taking him to the emergency room. He already had an appointment scheduled with his pulmonologist Friday, so we wanted to get him through.
The appointment was frustrating. We did get steroids and refills on breathing treatments. But seeing him so sick as a follow up to his procedures makes her feel like being extra conservative. She started talking about leaving the trach in place until next summer when he was getting ready for heart surgery. She will defer to the cardiologists and the ENT about what they want to do. I won’t know until the middle of next week what the other doctors think should be the next step.
Brendan had to go for a chest xray too. While we waited, he pulled the bag dispenser off of the diaper bag and made it into a spaceship for his Lego guys.
Saturday morning, since Brendan was stable, we ran out to get supplies for a new project. Going to IKEA on a Saturday was a big mistake! Wow is that place crowded! But look what you can buy!
It has taken me 48 minutes to write these last few sentences now that the boys are awake.
Hopefully Brendan will shake this cold away. His MRSA bumps are gone, but I am watching Trevor carefully because he has some tiny pimples. It is terrible now that I will get paranoid about every bump and heat rash. I have a bump in my hairline that could be nothing but I am on guard for that too.
I am really hoping things turn around for Brendan. We all need rest.
