The day started out a little out of whack because Trevor slept in! He was up late last night so didn’t get out of bed until after 7:30 this morning. Since we had a full day, he had to skip his first breakfast and tummy time and go straight in to oatmeal, squash and bath. Since his outfit most certainly dictates his disposition for the day, I dressed him in “Daddy’s little helper” outfit. He stayed home with Daddy today while I went to the hospital. He really was a good boy, and got plenty of tummy time later in the afternoon to make up for his short morning.

Brendan had his usual morning crabbiness but when I got there, he was getting to his late morning tummy time nap.
I shared a can of Sprite with Brendan today, I should write the Coca Cola company and thank them.

Just as Brendan had gotten all super cozy and still and deep in to sleep, the nurse pushed his medications through his feeding tube. His meds include a baby aspirin all crushed in to a fine powder and dissolved in water. He also gets his Prevacid which is a very viscous sticky goo. Pushed without enough liquid, this combination can jam up in his tiny little feeding tube. He had a hard packed clog!
The last time this happened, they pulled out the tube and put in a new one, causing Brendan to have an epic meltdown. Today, a savvy nurse said that with older kids, they used Coca Cola and that it would sometimes dissolve the goo-powder clog. With the doctor’s permission, they put 10cc of Sprite (no caffeine!) in a syringe and worked on the tube, trying to push and pull the liquid through.
Sure enough, it finally broke through and the day was saved! (and then I finished the Sprite, Brendan passed a little gas, and no tube replacement was necessary!)

But the day had only begun to get exciting. Once Brendan woke up and was in a smiley mood, he started his sprint. The respiratory tech experimented with his settings for a few hours, and then with the blessing of several intensivists, RTs and his pulmonologist, Brendan got to try to come off of the ventilator!!

They were hoping for just 5 minutes to see how he would do. What would he do? Was his fighting the vent his way of telling them that he was ready to come off of it? At the end of his sprint, they brought in a trach collar. It is just a little dome that sits over his neck (it does not attach). It blows heated and humidified air around his open trach. (an elastic band goes around his neck to keep it in place. For today it was 50% oxygen.

He did AMAZING!!!!! Not only did his heart rate stay steady, but his saturation barely moved and he looked more comfortable than on the vent. His 5 minutes turned in to 15, then 25. He had a few coughing spells and got rid of some nasty thick goo. Then 35.. 50… that boy ended up doing an hour and a half of breathing all by himself! I was so proud of him and excited. When he was done, he went back on the hospital servo to rest and he took a nice nap.

It was everyone else in the room holding their breath, waiting to see what would happen. Brendan was wondering what all the fuss was about.

“I got this” says Brendan

When I left the hospital, I just was overwhelmed with nervous anxiety and excitement. I want so much for him to keep improving and to show the doctors that he is ready to get out of there, but I am so worried about setbacks. If they push too hard, his lung could collapse again and we don’t want any more damage. He will have a blood gas and chest xray to check on him several times over the next week. Going forward his goal is going to be 2 sessions of 3hr sprints on the Trilogy vent and 1hr of trach collar per day. The end ideal is to go home on only the trach collar, with vent support at night to allow him to rest!

I drove home to pick up Bill and Trevor and take them to the car dealership where the truck was being repaired. While on the road, a giant haboob rolled in and it started pouring with thunder and lightning. Trevor was a bit startled and would cry in the car unless I kept singing “Eensy Weensy Spider”. He was ok once we got home.

And the rain was coming down with the giant dust wall rolling through.

Bill went to see his dad who has been kicked out of the hospice home for doing too well. We are so glad he is feeling good, and he is settled in to a new group home where he can get the care he needs and hopefully stay comfortable! It was a big day all around, hopefully the ball is moving in the right direction now.