I am happy to report that there was some improvement today with Brendan’s numbers. He was playful, happy, busy, crawling, climbing, laughing and smiling and if it were not for the oxygen flow and the pulse-oximeter, you would never know that he wasn’t all better. We go to see the doctor again tomorrow afternoon for a follow up. Hopefully by then, he will have made a bigger improvement.

I was trying to take a picture of the bad rash. It is all over his forehead and down his hairline, behind his ears and on his neck. The camera doesn’t pick it up well.

This is Brendan-attack face. If I sit on the floor, he crawls right over and tries to climb on me!

As if Brendan’s journey wasn’t enough of a roller coaster, having a Trevor is a new adventure and a new challenge every day. Keeping him busy is key! We started with a quick run to Sam’s Club for more diapers. We filled up the car with gas and went through the car wash. He didn’t cry a bit this time, I think he is starting to like it.

We came home and sorted clothes. We made a pile of stuff to send to Pittsburgh. Everything but the little chairs is going in the box. We’ll even throw in the juice cup for the trip. 🙂

And here’s another little Trevor montage for a good laugh.

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!