This morning was such a relief. Even though Trevor was up for the day at 4am and I was short on sleep, the fill-in nurse did a good job with Brendan. Even though the nurse left at 8 and Bill was in the office until around noon, everything went smoothly and the boys seemed to be doing so much better.
But then Trevor woke up from his afternoon nap with more fiery diarrhea, a.k.a. fierrhea. It was no joke, the poor baby’s skin is just so imflamed and painful. He had a miserable evening. I just had to keep soaking him in the sink to get him clean, baby wipes burn too much. (I dare you to try them yourself when you are a little raw, they are awful!!)
I tried talking to the pediatrician’s office but will have to call again tomorrow, there was a bit of a miscommunication there.
We owe a big thanks to our friend Lisa who brought a wonderful meal and wasn’t afraid to dive in and literally get her hands dirty to help. It was much appreciated. Sorry I couldn’t get a hug before you went home. Lisa went out to talk to a pharmacist for us about finding anything to help soothe the burning because 5 types of diaper cream didn’t help.
The pharmacist said it sounds like this is the rest of the battle with the virus that gave him his cold and that we have to ride it out. Keeping his poor behind clean and slathered in Aquaphor to protect the skin from further damage is all we can do to help it heal.
So the journey is not over yet. I hope he can get though this fast.

Brendan had a great day in comparison. He is not back to 100% of where he was, but he is ready to move on with his other progress like sprinting and weaning. He got a lot of rest today, he even took a nap after his bath while I did his trach ties.

He even survived a bear attack

Trevor had to go have words with the bear

“Here is the bear, bro, I will take care of him if he give you trouble again!”

“That goes for you too!”

Trevor was very funny with Brendan this morning. He walked right up to Brendan and squashed B’s nose flat with his finger and said, “Hiii, Din Din!!” I am not sure if he thought Brendan looks good enough to eat for dinner, but it sounded to me like he tried to say ‘Brendan’!

Then again, he was also really happy to see roverT and give him lots of high fives!

It feels like we are almost over this giant speed bump we hit. Thank you again, Lisa. I am thankful all of my east coast friends and family are safe and hope the cleanup goes well. I hope Gramma and Maria have a good road trip to see the soon to be cousinasaurus family. We hope nurse Sherelle gets good info and can heal quickly. Things just need to keep getting better.

Wrapping up this first week of the new year for the boys, all I can say is that I want a fresh start! It was a hard day. Brendan is still so-so, but not getting any worse. Trevor’s issues moved to the other end and liquid fire poop made his poor little butt red like a fire engine. He had to get multiple baths today to try to help him out. He was pretty miserable and it took two people to change his diaper and get him clean and smeared with diaper cream. He will love me years from now for sharing this info on the blog, of course. He hasn’t eaten anything new or unusual so I do not know what it the cause of this other than just being ill already.

I am feeling completely defeated and depleted. But just when you think that it can’t possibly get worse, it does. Our regular night nurse has an injured shoulder and can not work tonight. The nursing company found us a fill-in but she has never been here before so it will be interesting. Having any kind of help is better than trying to cover it ourselves.

Brendan does fine through the day if we stay on top of his breathing treatments. The nebulizer can connect straight in to his vent circuit so we can do them even when he is asleep and covered in sheet wrinkles.

He did sit up and play today, I think he is on the upswing from all of this. The Albuterol makes him a little silly too.

Even his crazy smile makes me feel better.

I didn’t take any pictures of Trevor today, so I grabbed a couple from his crib cam just now.

After dinner, he sat out on the porch with me and passed out some Halloween candy. There were not too many kids, but he really was mesmerized by kids in costumes. I think he really enjoyed it. We turned on the bubble machine that we got for portraits and the kids coming up to the house loved that. People were even taking pictures.

And now that they are both in bed and the day is done, I look back and realize that we can get through these days, we just do it. I mean, look how far we have come since last Halloween!

I had a Halloween picture in mind to take today, I will just have to do it tomorrow when everyone is feeling better!

Trevor seems to be feeling a lot better today. Just a bit of nose issue remains, but he went all out spazz crazy today as if to make up for being held back by illness over the weekend. He just wanted to pull and tear and slap and shake everything and jump and crawl fast and yell. It was about all I could handle!

I had a lot of phone calls to make this morning to schedule lots of appointments for Brendan, but Trevor decided that he was going to help.

We set up one of the old mini cribs in our bedroom when Caleb was here so that he had a place to nap quietly. We haven’t taken it down yet and it actually has been very useful. It is a great “holding pen” for Trevor when I need to use the bathroom or get dressed or even to get my shoes on without crazy t escaping.
I put him in there today and he thought it was a bouncy house or something. He was a nut! This is a long video of him just being a bit silly.

He went to Sam’s Club with me to get groceries and he got to try out his new cart cover. It fit perfectly, so much better than trying to use blankets.

“What does this thing do?”

After almost forgetting the diaper bag, I joked with Brendan’s nurse that you NEVER leave home without the diaper bag, no matter how short the trip. I am so glad I remembered it because by the time we made it back to the car, the new cart cover was pooped and Trevor’s shorts were all soaked with poop. I had a couple of old blankets in the car to spread out. Getting a diaper on Trevor is already like trying to tie a snake in a bow, changing him in the back seat of the car was a riot. Good thing I just bought two cases of baby wipes.

Once we were done there, I had to stop for gas and Trevor got to go for his first car wash. I should have just tied him to the outside of the car! He was not real happy with the drive through wash.

Brendan is still not great. I spoke to his pulmonologist’s office today and they ordered a culture of his trach to see if there is any reason he needs to be on antibiotic. She also ordered his breathing treatments to be used via the nebulizer to help open up his lungs if he can not maintain his saturations. Unless he spikes a fever (which there has been none) or starts requiring a lot more oxygen, we just have to keep giving this time.

In the meantime, he is just supposed to rest.

His mood isn’t too bad, he is just tired and congested. He spent some time web surfing with Dad this evening.

One day at a time, we just hope things get better soon!