This has been the longest week so far, I hate not seeing Brendan. I only know what the nurses tell me about how he is doing and I am left wondering. Especially when they like to just say “he’s fine” and not much else.
He moved to a new room on the floor last night. At least they were kind enough to talk to us about it beforehand this time and Bill was able to pack up most of our stuff. He is being grouped together with other long term stay kids so that nurse staffing can be made easier. His recent neighbor was seriously high maintenance, so hopefully this helps him get a little more attention especially where we can not be there right now. The new room has three chairs instead of two and a little more floor space, guess we should feel like its an upgrade.
Bill started feeling symptoms again today of the same crap I have been fighting and went straight to the doctor. He is on an antibiotic now as well, we just hope Brendan is safe from this. So far Trevor shows no signs. I am feeling a bit better and eager to put this hurdle behind us.

My last call to check on Brendan just now, the nurse said he was a bit agitated today but having a good day otherwise. He was able to do a 2hr sprint on automode and did well, so that is good news for him.

Trevor has been a good boy today, with intermittent spells of cranky mixed in. He likes to video chat with family and I have to start to be mindful about having the television on because he gets sucked right in to watching it.

Starting the day with soak in the sink

And a conversation with a duck

Crabby shirt means crabby baby?

No just kidding!

It was a long day. I feel pretty miserable, but I am getting my antibiotics on board now and should recover soon now (I hope). The PA I saw this morning said it was a sinus infection but my lungs sounded clear (for now!). She recommends 48 hours of drugs before I go see Brendan again.

Bill worked from home today but was really busy. He did manage to step away long enough to save me from having a melt down, taking Trevor so I could go have a nap. Fortunately Trevor decided to sleep too. When Bill was done with work, he was off to deliver Brendan his clean linens, visit his dad, do some shopping and other errands.

Trevor slept a lot today, but still shows no other sign of fever or illness.

Brendan’s doctor made my heart skip when he called me this afternoon. This is the same doctor that called me when Brendan had his crisis before, so when the number came up, my mind went every which way! Turns out, he was just calling me to update me on everything since I can’t be there. He hasn’t seen Brendan in weeks, and was pleased with him today!
His plan this week for Brendan is to sprint him off of the NAVA in a ventilator mode called auto mode with pressure support. It lets Brendan do all of the work and just gives him minimal support when he needs it. It gives his lungs the little positive pressure at the end of a breath to keep the weak areas open and prevent collapse.
If he does well, they will work up to longer and longer sessions of automode and then try him again on the home vent with similar settings.

I did not have energy for pictures today, and Bill did not have time at the hospital without his phone ringing, so there is little to share. Just this picture of Trevor and his nude time enjoying his evening bottle.

Another difficult day is behind us. I miss Brendan, and I wish that I was well enough to enjoy the time with Trevor more. He was kind enough to take a 3hr nap midday so I was able to nap too. Bill had a lot to do today with his dad (Granda Jack might be going tomorrow to a hospice facility, as soon as they have a bed there for him) and then he went to visit Brendan. He also stopped at Sears and ordered Brendan a super spiffy high end tool box to store all of his medical supplies when he is home. I like to imagine that when he is a man, he will have it in his garage, full of tools (no more medical supplies!)

I had a high fever overnight, I have been taking ibuprofin and mucinex to manage through the day. I will be visiting my regular doctor’s office tomorrow. Trevor so far has been a little more tired and cranky, but no fever, no congestion so far.

It is way to soon to be hitting 100 degrees, hopefully we have a cool spell again soon. At 104 outside, even with the misters on we were not able to spend much time with Trevor in the stroller. It is too bad because he really enjoys it. Good thing we built such a long patio.

Trevor likes his evening nude time before getting in his jammies for the night. He enjoys his brother’s rainforest toy and can’t wait to share it.

The nurses tell us that Brendan is doing well. He slept the whole time that Bill was there, even though he hasn’t had any extra drugs. At least he is upright in his bouncy seat a bit, and looked comfortable.

I probably won’t be able to see Brendan until at least Wednesday. I hope he continues to improve.