There is nothing as new and exciting as yesterday to write about tonight. Brendan did 3hrs on Trilogy on the night shift and did super well. He did 3hrs on the day shift today too and did great up until the last 20 minutes and then he was fighting the vent.
He did an hour on the trach collar again and relaxed. His plan going forward is to stick to this same schedule for the rest of the weekend. Then they will work on increasing his Trilogy at night and more trach collar during the day.
We will see if this plan lasts!
The biggest frustration with Brendan right now is that he still has these episodes of distress twice a day – close to 5am and 5pm. He is obviously in some kind of pain and nobody can figure out what it is. In the past, they have just masked it with drugs to make him sleep. We are trying everything to figure out what is bothering him, and why it seems to be on a cycle even though nothing else correlates. We stayed late tonight to get him through the spell and he did finally fall asleep. Apart from that, he had a pretty fantastic day.

We gave him his baboon to keep him from grabbing the trach tubes.

He is good at multitasking though

This is right after the full deluxe spa treatment. All cleaned up with a bath, a massage, new stickers, new bag, new suction tubes, and all new bedding!

After he was done with work, Bill brought Trevor so the whole family could be together.

Bill spent plenty of time spinning the animals on the mobile for the entertainment of both boys.

It was coincidence that the nurse picked out the monkey blanket when we changed Brendan’s sheets and then Trevor shows up in his monkey outfit again.

Bill tries to comfort Brendan during his difficult time.

After lots of rocking and a tight burrito wrap, Brendan finally calmed down and fell in to deep sleep.

Trevor had enough as well!

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.

Today was exceptionally long and exhausting but really fun at the same time. Trevor spent all day at the hospital with me so that he could help his brother with his physical therapy.
Tonight we attended a support group meeting and met a bunch of other families of heart babies. Trevor did well for being out late with me, but he was pretty overtired when we came home. Brendan did a three hour sprint on his Trilogy and did well. He had a pretty full exciting day too and has slept so far this evening with no melt downs.

This morning, Trevor got to try baby yellow squash for the first time. I would say it falls under the green bean family of Trevor’s tastes.

Trevor had to attend the family meeting with me this morning, so he put on his button up dress shirt. No epic poops in the meeting today, he stayed professional. Then he took a nice nap.

Brendan’s physical therapy went well. He did an excellent job of looking at and reaching for his toys today. He tried a new side lying position for playtime and it worked well for him. When he was done, the therapist helped to get him positioned on his tummy for a nap.

He woke up from his nap ready to play. Trevor had just blurped all over his nice dress shirt so had to strip down to his diaper. Since he matched his brother, we put them together for a while.

There are too many cute pictures of them together, it was very hard to pick out my favorites.