Brendan was significantly better today, in that he was awake, alert, playful, and breathing a little better. He is still on 5L of oxygen, getting his breathing treatments every four hours, getting lots of pain meds and he is on his steroid treatment. It was so good to see his eyes open and his naughty smile though.

Trevor was as cranky as ever, so we did an outing. I didn’t know where to take him in this weather, so I thought he would like a long drive across town, and then we would stop at Cabela’s and see the fish and animals. He was crabby in the car, so I am sorry we drove so far. But he liked the store.

We originally thought we might get lunch at Cabela’s but decided to stop at the Rainforest Cafe, thinking Trevor might like it. I forgot how loud and obnoxious it was. Trevor did not know if he should be scared or impressed, but he just stared and took it all in and ate his lunch.

Brendan was feeling sassy enough to ride on his rocking horse

He’s a tough guy

Don’t mess with tough Brendan

There was a time when he would not touch the horse because the mane was too fuzzy. Now, he knows how to squeeze the ear to turn it on

Brendan was pretty wired tonight, the steroid makes it hard for him to get to sleep. He was being all goofy and crazy instead of rocking and going to bed. He finally let go and went to bed by 9:30. Here’s a few shots from spy cams to finish the post.

Lately, our lives feel like we are trying to go up a ‘down’ escalator that is going really fast. If we keep moving, we make progress and even sometimes feel like we get a glimpse of the top. If it slows down, we might feel like we can take a break, but if we rest, before we know it, we are back near the bottom again.
Poor Brendan had a really rough day, and used all of his energy to breathe and throw up. He pretty much slept all day, or watched videos while being held. His pulmonologist has ordered him a steroid burst to help with the inflammation and to help him fight this off. She also wants him back on the ventilator every night to sleep, even after he gets well again, until she sees him in October. She thinks that maybe he isn’t ready to get off the vent after all, he may be using too much of his own energy breathing and not getting fully restorative sleep. That sets him up to be weaker when it comes time to fight off illness.
So we slide back…

Trevor isn’t old enough to understand that when we are terribly worried about Brendan that it would be nice of him to relax and play, or sit and quietly watch a movie. He was wound up, still has a stuffy nose himself, and he wasn’t liking all of the attention that Brendan was getting. Since Bill worked from home, Brendan had a nurse, and there was nothing more that I could do to make anything better, Granddaddy, Trevor and I left the house to give Brendan the best chance to rest.
We did a little tour of three local hobby stores looking for some new tracks for the very old trains that Granddaddy brought with him. Trevor really liked to help shop.

One place even had a cool train table set up for him to play

Then Trevor decided that he really needed some fries and tots from his burger joint, so we went there for lunch

Brendan slept and slept. He would get very hot if he was held too long, and he was needing too much “access” to be in his crib (and he wasn’t liking that) so Bill and his nurse set him up a “bed” on the floor. He was much more comfortable there.

He is getting lots of love and cuddling and care and he is hanging in there. In the past, his numbers have been a lot worse than this. I just hope that we have hit the low and we are on the way back to healthy. We really want him to stay home and fight this off.

Granddaddy helped keep Trevor occupied with coloring in the office. Trevor did a great job with it for a long while, but then he just couldn’t resist. He took a bite of a crayon.

Trevor went to bed with a stuffy nose enough that he couldn’t use his paci, but he is doing OK. Brendan had his sponge bath in the living room and is having his “Daddy nap” in the chair. We hope that he is able to be a bit more alert tomorrow and that he feels much much better. And maybe we can take a few more steps up again.

I didn’t want to have to write this, but as soon as I saw Trevor’s drippy nose, I knew it was unavoidable. We have a very sick Brendan again. It is hard to look at his pictures from just yesterday where he is doing his jig and smiling so big and believe that was 24hrs ago.
This morning Brendan had a very thick runny nose and gagging drainage. By midday, we had turned his oxygen up some and he was coughing up a ton of slime. By dinner time, he was working hard to breathe and we gave him a breathing treatment. He started projectile vomiting. Once I put Trevor in bed, I gave Brendan a bath and changed his trach ties and he was so exhausted he was struggling to keep his eyes open, but he couldn’t relax. He was breathing hard and fast.
By 8:30p, we had to get out the ventilator and give him some ibuprofin. It took him 45 minutes to stop battling the vent and fall soundly asleep. He is on my lap and finally still and I am doing the blog with one hand.

And for all this, Trevor still just has a slightly runny nose and it hasn’t slowed him down a bit.

Granddaddy arrived this morning on an uneventful flight and Trevor and I went to get him. Both boys seemed to like him right away. Brendan even smiled and waved when we got home.

Trevor was thrilled with his little briefcase and luggage cart. He dragged them all around the house like he had a business meeting.

He even let Granddaddy read him books while I made dinner and cleaned the kitchen.

Bill tried to help Brendan be comfortable.

We just will hope that we can keep Brendan out of the hospital this time. 🙁