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.

I didn’t take many pictures today, it was all about trying to keep Brendan feeling good and to keep Trevor entertained. Brendan had a decent day as long as we kept the Motrin and Tylenol going. You could tell when it was starting to wear off and his fever would creep up and he would feel terrible.
Tonight I got worried because he hit 104 and his sats were sitting in the low 70’s with a heart rate near 200bpm. The on call doctor at the pediatrician’s office apparently didn’t deem it necessary to call me back when he/she was paged. I put cool towels on his head and rocked him until he could have his next dose of Motrin and go to bed. He got past that spell and is doing better now, cool as a cucumber and not wanting to sleep.

Brendan is chewing on his pulse-ox probe plug after I told Trevor he could not. You would never guess which baby was not feeling well from this picture!

Trevor finished up his broccoli like a good boy and he is signing “please” for the rest of his dinner.

He is celebrating cousin Ashley’s birthday with fish and chips! Not from Fibber Magee’s pub, more like Gorton Ore-Ida’s. I told him that the fries were hot, so he was blowing on them!

This was his first try of Ketchup and he approves.

I look up as I am typing and this is what I see. He is calling me too, but he doesn’t have his PMV on so he just makes little squeaks.

He is back to feeling better and he wants to play but his numbers still are yucky. We have no nurse tonight, so I am hoping that he finally goes to sleep and gets lots of rest.

We hope cousin Ashley had a fantastic 9th birthday! Big hugs from everyone!

“Houston, we have a problem”

That should have been an indication of how the rest of the day was going to go. Brendan had a good night of sleep but woke up feeling a little warm. As the day progressed, he just got worse. His fever peaked at 101.5 and we had to turn his oxygen up as high as 4L (he is usually on 2L). His heart rate was elevated and he was just tired. There are not enough other symptoms to know what is really wrong at this point, so we just have to keep him comfortable for now.

We propped him up on a pillow for a Yo Gabba Gabba marathon.

He just wasn’t feeling good. We did about 15 minutes of PMV time but he wasn’t doing well on it so we took it off for the day. He had speech therapy but was not interested, and almost fell asleep sitting up to play.

Trevor didn’t mind all the TV time. He is feeling just fine so far, same with Bill and I.

Trevor is trying to cheer up Brendan with some riding. I put new batteries in the horse and he was sitting on it a lot today.

I let Brendan’s fever burn most of the day because he didn’t seem too uncomfortable and hopefully he can fight off whatever this is. By 3PM he was looking pretty miserable so I gave him Tylenol.
By dinner time, I thought he was feeling better. He always manages a smile.

Brendan is holding the ultimate prime object – the digital thermometer!

He checks the temperature of his toybox

He had a nice bath and was all clean and fresh and ready for bed. I got his area all settled and I picked him up to rock him to sleep and he vomited all over me, himself, his new trach ties, the chair, and the floor. I don’t know if this means he has a little stomach bug or if the vomit was just a side effect of the fever and illness.
Poor Brendan. He went to sleep quickly, I hope he gets lots of good rest tonight.

Trevor just had a normal night routine. He is still working on using utensils with dinner. He was digging in to meatloaf, mash’taters, and peas.

Forget the spoon!! Shovel it in with hands! I consider it progress that he didn’t throw the bowls full of food on the floor. He threw the bowls when they were empty though. The dogs were there for the meatloaf bowl.

After Bill finished working today (He got to sign out early because he was up through the night on conference calls), Bill and Robert did a tremendous amount of work on the new room. I will take new pictures in the morning.

I just hope Brendan feels better tomorrow. Why does this always happen on a Friday? We need a good weekend!