Brendan had a decent night of sleep overnight. He had several times where he woke up needing suctioning, and many times where one of the monitors or machines alarmed or beeped and woke him. He had a great nurse and RT in the CVICU that took care to let him get as much rest as possible. They helped me get a few scattered hours of sleep too.

Brendan woke up this morning still seeming weak and tired but he was definitely improved. As the day went on, he took two more solid naps and just kept steadily improving. He started taking interest in his favorite things again, like his sport-top water bottle.

He even started teasing me with little almost-smiles.

He played with his favorite apps too. I was just happy to see him alert.

He even broke out super-concentrating face

Hour by hour, he kept improving. This is how he tells everyone that he is ready to go home – standing/cruising around in the crib, and suctioning his own mouth.

After trying to do a day of work and watch Trevor at the same time, Bill came to pick us up to go home. Trevor immediately went for the remote control.
“Do they at least have cable in this joint?”

He also sorted oral care kits

Brendan isn’t in the corner because he is in trouble, it is just a tight fit with The Whale in the elevator!

Trevor had to bring his own ride

We’re outta here!

I think I am starting to hallucinate because I am so tired. My eyes want to cross. I hope Brendan has a really good day tomorrow, we are so glad to have him home again.

I had a rough early morning with Brendan. He was so uncomfortable all night, tossing and turning and sitting and rolling. He didn’t want to be touched and yet he wanted to be held. I felt so bad for him. Just when he would finally get to a comfortable spot, someone would come in and want to do something to him. At 4am I was having to argue with the respiratory manager about using Brendan’s home equipment and he would not relent and insisted that they had to use the hospital’s vent circuits and heaters. When they switched him out, Brendan got worse, just like I said he would.
I was up all night either comforting Brendan or deflecting stethoscopes. I may have had 2hrs sleep with a few 10-15 min catnaps here and there.

I was relieved this morning to see Bill and my Li’l T. They brought me my supplies! Fresh water, coffee, 5hr energy, Mucinex, and lots of hugs.

Trevor can’t stay in Brendan’s room for long, he goes nuts wanting to explore. He broke out the nurse’s emergency flashlight and was trying to get in to the under-crib storage area.

This is why at home we got round door knobs with a firm twist. Trevor kept going in to the bathroom.

I think they were happy to see each other

Bill took over the Brendan-care and I took Trevor home.

Trevor was supposed to take a good nap so I could rest, but he thought an hour and a half was enough. It was creepy-quiet in the house without Brendan there, but Trevor and I had some good one-on-one time. He helped me do a ton of laundry too! He likes to do all the button pushing on the washer and dryer to start each load, and he runs the lint from the lint trap to the garbage. Our washer has a glass lid so he likes to see the water pour in and the clothes start to spin and agitate. If only it would last!
After I fed Trevor dinner and gave him a bath, I got him in his pajamas and we drove back to the hospital. A quick exchange and Bill took him home to put him in bed.

I am here with Brendan for the night again. He has been moved down to the Cardiac ICU and we are very grateful. All the staff here know him so well and even in one night, you can see the huge difference.

Brendan’s cultures came back with a plain old rhinovirus. Big surprise – that is what Trevor and I had/have. The trouble is that instead of getting caught in the nose and sinus like a normal person, the virus went straight in through his trach to his airway and caused all the inflammation that is causing him to have so much trouble breathing.
This is what we try to explain to people all the time, why we weren’t allowing many visitors when he was younger and even more fragile. Even the most simple bug that is “no big deal” to most is very serious for Brendan. Not many people have go to the ER with the common cold.

Brendan continues to get breathing treatments to keep his airways open and he is getting his IV steroids to help with the inflammation. We took him off the ventilator today because he is strong enough to breathe without it! That is a big deal, we don’t want to get stuck on the vent again!
He is on a ton of oxygen to keep his numbers right, but his heart rate is beautiful and he is actually getting some good deep sleep tonight.

There was no bacteria to treat in his cultures so there will be no antibiotics or other medications. He just needs to fight through this like me. My nose was super drippy and I was sneezy today but if Brendan sleeps, I can try to sleep.
We are in a room with a flytrap couch instead of a chair to sleep in, but the flaps actually stay up on this one. 🙂

We love the message that we got from cousin Caleb today for Brendan, so I wanted to share it here too. Thanks Caleb, you are sweet as can be!

It didn’t seem like it was going to be a bad day this morning. I woke up feeling better, Trevor seemed to be in a good mood, and Brendan had an “OK” night but he was on his normal oxygen in the morning and his numbers were ok.

He just started to decline quickly. As each hour of the day went by, I had to keep turning up his oxygen. He started to visibly work harder to breathe. By 11am, I had pulled out the ventilator for him to try to give his body a chance to rest and recover. It didn’t help much.

By the time Bill got home from work, I was really scared by the amount of force it was taking for Brendan to exhale and his oxygen needs were too high. He looked miserable and tired, he couldn’t sleep even though that is all he wanted to do. We knew we had to go in.

Arriving at the ER, they immediately classed him as a “Level I” and rushed him to a “resus” room. The stabilized him pretty quickly with some breathing treatments and extra oxygen. Then they traumatized him with a chest xray, starting an IV, and doing nasal swabs. It took a long time for him to calm down. The xray showed no sign of pneumonia but it did show some hyperinflation from his inflamed airways.

Then we just had to wait four and half hours for a bed so that he could be admitted. There were no beds available in his usual cardiac ICU so he had to be admitted to their regular pediatric ICU.

The admission process is traumatizing to Brendan and both of us. We get hit with a barrage of questions while a huge mass of people in masks and gowns attack from every direction, all of them trying to get a stethoscope on Brendan or to poke or prod or push or hook something up.
I would guess there were 9 people. Only 3 of them bothered to tell me who they were and why they needed to be there. They are as aggressive as a bunch of children when a piñata breaks open, all trying to get to the same small place.

I could have gone my whole life without seeing a trauma room in the children’s ER.

I asked Bill to back up a bit so I could take Brendan’s picture

But he was stuck

It was a struggle to get rest, he finally got a short nap on my arm until it fell asleep

I don’t know how he is supposed to get comfortable

Getting ready to move to his real room

And here are his temporary quarters. He will be here a few days I am sure. He is on IV fluids and IV steroids for the respiratory inflammation. His trach smells very bad so we are waiting for all the cultures to come back with results so they know how to treat it.

I hoped I was past the illness, but currently my sinuses are jam packed and my eyes hurt. I hope Trevor is still OK in the morning.

We owe a big thank you to Christine who came right over and took care of Trevor tonight. He was able to eat, have his bath, read and play and go to bed on time. Bill relieved her just after midnight.
I only have one picture of Trevor from this morning, he got ahold of the phone and I think he was trying to dial China.

It is going to be a rough couple of days, we all hope Brendan gets better as quickly as he got so sick. This illness hit him hard and fast.