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!

This morning was all about a trip to the GI doctor. With no need to pack the ventilator and breaks from the feeding pump, it made transporting Brendan a LOT easier!

He even wore his PMV for the trip!

Brendan is not the only one that likes to chew on toes.

Without all the extra equipment, The Whale stroller can actually carry two boys properly!

Trevor did a great job waiting during the appointment!

Brendan always has his apps for comfort when he is scared.

Everything was quick and easy. Brendan lost a tiny bit of weight which is what they wanted. He was 24lbs 12oz. They won’t be changing his calories. We are going to keep moving bit by bit toward giving him his formula faster over a shorter period of time so he is connected less. Eventually, he will have scheduled meal times and will get several ounces quickly just like a regular bottle feeding.
The more time off he has, the more likely he is to feel hunger and be willing to take food by mouth. It must help that he had a two hour break, because he ate almost half of a carton of Sweet Potato/Corn blend!!

Doctor’s appointments wear everyone out.

Bill had to work late and be on the phone so Brendan decided to be an epic crab tonight. He would scream loudly unless I picked him up. I was trying to make dinner and feed Trevor so he did a lot of crying. It is his turn to learn that crying does not get what he wants, it is just a shame it has to be so loud! It is a good thing that all that yelling is good for his breathing muscles!

Besides all the screaming, Brendan is doing more and more experimenting with making sounds and moving his mouth. The first half of this video is just talking with the PMV. In the second half, we are experimenting with ‘capping’ or completely blocking the trach tube so that Brendan has to breathe in and out through his mouth and nose instead. We are encouraged at how well he did and I love the sounds!