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. 🙁

The toddler drama continues. We are trying to find ways to help Trevor cope with Brendan’s noise, but nothing has been successful so far. Trevor woke up with a stuffy nose this morning, so keeping the boys separated seemed like a good plan for the day. He probably picked up something at the gym or the aquarium, so now we have to hope Brendan doesn’t get it too.

Brendan has also been the naughty little instigator. He LIKES to see Trevor melt down and will chase him and yell at him just to get the reaction. Trevor can be screaming and Brendan will be giggling and putting his finger in his trach so that he can yell louder. He crawls over and tries to climb on Trevor and then looks shocked when Trevor hits him on the head.

Because we have no nurse on Mondays, Brendan got to go spend the morning in Daddy’s home office. He wore his PMV with the O2 adapter and made tons of noise and explored and had a blast. Trevor and I ran to the bank and then just drove around and looked for airplanes and trucks and called Gramma on the phone. We got home in time for lunch and naps.

Trevor hasn’t had a great appetite today. I knew he wasn’t feeling well when he wouldn’t eat his strawberries for breakfast. He did feel up to licking out the empty nutella jar.

Brendan had to do cleanup

Trevor got all clean and had to get himself a drink

Bill was trying to get Brendan to practice his standing and balancing, but every time Bill would stand Brendan up, he would start dancing and flopping his legs in this funny little jig

We kept Brendan away from the dinner table tonight, but that did not stop him from yelling and getting Trevor so worked up that he choked on his dinner and almost threw up. We had to put on a movie to keep Brendan occupied and Trevor settled enough to get dinner in him.
I soothed his nerves with a blue popsicle.

Going by the blog (and the fact that Trevor yells “Coke!” when he sees a large cup with a straw), you would think I stuff Trevor full of sugar and caffeine (and coffee). He really eats very well and loves his veggies still. If the blog was open to the public, I am sure I would have an abundance of better-than-thou moms telling me that blue popsicles are causing all of our behavior issues.

I hope that Trevor wakes up feeling fresh and healthy. He is going to like going to the airport tomorrow to pick up Granddaddy!

To add to the naughty list, Brendan pulled his trach out twice today. The first time, I am not even sure how long it was out! When I got Trevor up from his nap, he came out to the living room still in his jammies and with his paci (usually that is not allowed to leave his crib). Wouldn’t you know it, the paci was dropped and next thing I know, BRENDAN has it in his mouth, fully, looking at me all proud.
So much for not sharing the germs. 🙁