We are still just waiting to see Brendan turn the corner and get his O2 sats up. We talked to his doctor again today and he wants to see him again at the end of the week to make sure that he is improving. Today he broke out in a lovely splotchy rash that the doctor thinks is most likely the end of the viral infection that started this whole mess. Worrying is exhausting.
Brendan’s usual day nurse had a stomach bug this weekend so she is working Wed-Thurs this week instead of Tues-Wed so it was just me and the boys all day. I didn’t think Brendan was up for PT so I cancelled it.

They started out this morning all nice and playful and calm

And then things started slipping

Some old tricks

Brendan seemed like he was in good spirits, and he was active and playful.

Trevor is melting in to a puddle of miserable pout because Brendan has his favorite truck book and I wouldn’t let him grab it away

Brendan says, “Here, eat this”

We have had to start locking the tool chest to keep Trevor out. He knows very well that you use a key and open the lock and that the drawers will open. Today he picked up an obturator (piece for helping with the insertion of a trach tube) and was using it to try to pick the lock!! I didn’t stage this or coach him at all, it was all his own idea. Trouble!!

He is also getting good with the tools

Brendan still did his OT this afternoon and he did a good job with different games

Another “something newww”

Brendan is unimpressed with Trevor’s antics

And here is a montage of adorable Trevor videos from the last few days.

I really hope that I write tomorrow about how much improvement we see in Brendan. We really really really really really don’t want to see him have to be admitted to the hospital.

I have never been so glad for it to be Monday. It was nice to be able to talk to the right doctors. Having a history with Brendan is so helpful. You should just see the look on people’s faces when we try to “quickly summarize” his medical past.
We took him to see his pediatrician this afternoon and we finally have answers. Poor Brendan has a bad double ear infection.

He got to be in the Nemo room at the doctor’s office today

I am giving him a pep talk, he wasn’t thrilled to be sitting on the crinkle paper.

He distracted himself by playing with his oxygen tank

Bill kept Trevor entertained, he did such a good job waiting.

Then we had to head to an imaging place for a chest xray. That place was PACKED. The lobby was standing room only.

Brendan’s xray results were good. It showed a small patch of atelectasis in the left lower lung, which would help explain his oxygen needs and lower sats. They could not rule out infection but said there was no sign of pneumonia.
He has an antibiotic now for the ear infection that should also cover his lungs and trach. Hopefully within the next day or two, we will see a big improvement in his numbers.

On the way home, Trevor found a new toy in the car – the suction-on window shade

“Charge!!!”

Brendan was just glad to be all done.

Brendan played some blues guitar tonight to relax. I never knew the guitar was a wind instrument.

What do you call a fresh from the tub clean and naked baby with a broom? A Squeaky Sweeping Streaker! Say that three times fast!

It was a long night/day so I didn’t take many pictures today. Brendan slept restlessly with numbers that were just OK but he made it through the night without issue. His fever has stayed low and we thought that he was showing a lot of improvement this afternoon.

He hit a real nasty patch tonight right before bed and it is so frustrating and frightening and it makes me second guess all of our decisions. Being immensely tired doesn’t help to cope with things. He is asleep and doing well again now so we just hope to have a peaceful night and then we can talk to all of his real doctors in the morning.
Weekends are terrible. Dealing with on-call staff and doctors that know nothing about Brendan is hard.

Brendan and Daddy having a quiet morning

And just our luck, Trevor has figured out the dog door. We tried to keep him away from it, mostly so he doesn’t get clobbered if a dog pops in suddenly!

We hope another day brings healing and improvement.