It was another hard day for Brendan. It really pains me to see him feel so bad. He just has so much drippiness from his sinuses that he chokes and gags and throws up all day. I changed my clothes four times, we did laundry all day and tried our best to keep him cleaned up. With all the spit-up, it is a good thing my nose is blocked up solid too, although the Dayquil/Nyquil combo have been doing a good job getting me through. His antibiotic should start to do its job and maybe tomorrow we will see some improvement.

He did sleep better on the ventilator last night and took some good naps on me today. He wore his mist collar all day long and I just tried to keep him occupied with his favorite things. I held him a lot.

The two healthy boys got out of the house. It was a great Trevor-Daddy day at the zoo, and they both needed it. It made it easy for me to give Brendan my undivided attention too. Bill came home with some great pictures.

Bill worked so hard to do as much as he could tonight so that I could try to get rest. We’ve put Brendan back on the vent for the night and we hope that he gets a good long sleep.

I am not sure on a day like today how I ended up with so many pictures. It was a very hard day, but the biggest difference was that Bill was available all day to help. We work best together and it makes it a lot easier to tolerate the chaos. Brendan had a terrible night. He got very sick very suddenly. He is back to needing double the oxygen again and he is vomiting up a lot of mucus and bile. Even on all that extra oxygen, his sats were in the mid to low 70s.

We started with the whirlwind adventure. Pediatrician’s office, imaging place for a chest xray, pharmacy, home. Trevor seems to be OK still, and he handled all the morning craziness very well. Brendan is back on an antibiotic. His ears looked clear this time. He has to have his albuterol breathing treatment every four hours. By the time we got home, it was already noon. I got lunch in Trevor and then the boys both took a good nap.

When Trevor woke up, I had to take him out of the house to allow Brendan to rest. So we ran to Sams Club for some NyQuil for me, and some other household supplies. I hate going there on a Saturday but it was full of samples so Trevor got his afternoon snack.

He liked the chocolate cheesecake one a lot

Then I decided to let him try his first frozen yogurt

“What do you mean YOU want a bite”

Maybe a spoon would work better

Maybe two spoons would work better

Brendan woke up from his nap seeming to feel a little better. He hardly slept all night, so he needed the rest. The boys got to open a package that arrived this morning. (And Trevor had to change clothes into the new romper I found at Sams)

Their very own potty chair!

Trevor demonstrates how it can be used as a stool to wash his hands. This step can support 300lbs!
(so the new romper is a little bit long!)

Trevor demonstrates how he can leap down

Brendan says “They think they can hide the glow-toe so I don’t pick at it”

Trevor tests the romp in the new romper

They did play a little crawling chicken tonight, Brendan just didn’t have his usual energy

His smiles were few today

I appreciate his enthusiasm but something is just not quite right

Brendan has it all figured out

Trevor has been giving lots of signs that he is ready to potty train, like trying to take off his diaper when he poops or jumping out of the bath water to stand and watch himself pee on the floor. I got him to sit on the potty twice tonight and he was just happy to sit. If he jumps out of the tub again, he is going right to the seat.

I thought things were improving and then we ended up having a terrible evening. After Brendan went to bed, he declined again. I had to get out the ventilator to help him breathe. Now that he is on the vent, he has stabilized. It is always scary when ER trips and hospital admissions loom over your head and you try to make the best decisions.
The chest xray results showed no pneumonia so that is good. He needs sleep and time for the antibiotic to work again.

Today was just plain miserable. I don’t know what is going on yet with the boys, that is part of the frustration of it all. Trevor is cutting his last teeth (canines on top) and that could explain his mood, his pain, and his runny nose. It is running clear and no other symptoms yet. Or maybe he has a cold and it will get worse before it gets better.
He cried from 5am through just after noon, with screaming, fits and tantrums. When Bill was able to take a lunch break, I put Trevor in the car and drove him around until he was able to fall asleep.
Brendan had a good night, but he was crabby and probably annoyed with Trevor’s crying all morning. He was jealous of me trying to comfort Trevor and pretty much cried all morning unless I was holding him and standing. He fell asleep during speech therapy and then slept for 20 minutes and was up for the day.
I am still weak and tired and just starting to be able to tolerate eating some things. I still have a bad headache and I am just drained, emotionally raw, mentally exhausted. Days like this are depressing and just drive home how isolated we are. I can’t have a kind neighbor over to watch Brendan so I can take a nap.

After Trevor’s car nap, things got marginally better. I tried to get the boys playing, and it would last only a short time. Then they would be in to nothing but trouble. It is constant.

Trevor was obviously not himself

There were silly moments

Trevor wants Brendan to chase him, and he does. Sometimes they end up playing crawling chicken where they head right for each other laughing. Most of the time they stop in time, but there were some head bonks.

As the night went on, Brendan started to do worse. He vomited quite a few times, bringing up slime and a little bile. I put him back on his mist collar and just tried to keep him comfortable. He did a lot of crying. You can tell he is not himself.

Brendan is cutting teeth too, so it could very well be all the drool and irritation that is making Brendan gag and throw up. He is putting his fingers in his mouth a lot and gagging himself that way too. But I always am nervous that he is getting sick, especially when we just got over all the crud.
I have such a terrible time with the throw up, especially the gooey medical formula smelling throw up.

I did my share of crying today too, but I can’t drown myself in self-pity because things could be a lot worse and we have gone through so much more. I hope we all feel rested and better tomorrow.