Let’s all go to the lobby… let’s all go to the lobby!

Ok…..BACK UP!

I was going to go to the hospital early this morning because a rep from the state long term care program was coming to assess Brendan. But an accident on the freeway had the whole thing shut down and I figured traffic would be a nightmare. So Trevor and I went through his normal morning, and he was having a nice nap.
And then the phone rang!
The discharge nurse wanted my consent over the phone to transfer Brendan out of the ICU to a small hospital where we can do our training and prep for homecoming! All I could say is WHHHHAAAAAT? TODAY?!!

Trevor and I packed up and got to the hospital as quickly as possible. Trevor actually slept the whole way there, it was nice he was able to continue his nap.

When we walked in, word had gotten around and everyone we passed was saying congrats. Brendan was out of his crib, sitting on the floor in a bouncy, wearing a tshirt and looking too cute just waiting to get the heck out of there!!

One of the things we had to do is have Brendan’s friend Jennifer from Child Life finish updating his Beads of Courage. I posted about it before, but if you don’t remember, Beads of Courage is a program for kids where they get different colored beads to document their hospital stay. It tells their story of treatment and gives them something to look back on later. I really love the program and Brendan has quite a string going. Just for example, he gets one yellow bead every time he sleeps overnight in the hospital. He gets a rainbow bead every time he has PT, a red bead for every transfusion, a glow in dark for every echocardiogram, a pale green for every xray, etc. He gets gorgeous hand made beads for milestones and significant days of courage.
http://www.beadsofcourage.org/

Brendan has an almost 40ft long string going back to his birthday!

It turned a lot of heads today to have his beads there for discharge. The staff all know what it means and many were pretty amazed at Brendan’s journey.

He will keep collecting his beads for clinic visits and echos and shots and things, even when he eventually goes back for his next heart surgery.

Trevor did such a good job today being a happy baby, especially with all of the chaos! He just got a little slaphappy!

Good thing there was still room for Trevor in the whale after we got all of Brendan’s stuff packed!

Bill helps the transport team from the other hospital get the car seat set up right for Brendan! He didn’t have to take an ambulance, just a nice transport van.

All ready to go!

Jennifer even made Brendan a going away poster and got all the staff to sign it for him. It is really special – there are so so so many people that have been involved in his care these last few months!

He is all settled in for now in his new room. We had too much work to do with admissions paperwork and helping the staff get to know Brendan so I did not take pictures yet in the new place. I will work on that part tomorrow! We are so excited and proud of Brendan. He may come home as early as the 28th. What a perfect birthday present that would be for me!!

We have work to do to get ready! We’ll be interviewing a nurse on Friday for his at home overnight care. I could go on and on, but I will save the rest for tomorrow’s blog. Very good night!!

It was an entertaining day today, with lots of positive!

This morning, Trevor won the day at breakfast. His turtle kicking game has him full of skill. With a move like lightning, he booted the bowl of oatmeal right out of my hand. It sailed through the air doing three flips and two and a half turns before landing face up on the chair still mostly full of oatmeal. Of course, the rest of the oatmeal was down my leg, on the chair, and all over the floor.
Once Trevor was done eating, I got the clean up crew involved.
They are going to have to start earning their keep as dogs. They had to get what was left in the bowl before they would clean up what was on the floor and they did a spotty job!

Of course, Trevor can’t have a day without a trip to the sink

Then he had a little sleepover with his brother!

Trevor slept soundly.

Brendan had other plans

Finger? What finger? Oh, I was just putting it in my mouth.

Brendan had a really good morning. I thought he looked great and had nice color today, and at the time of this photo he had been on Trilogy for 28hrs! He also did two collar sprints.

Trevor wants in on the wire pulling game

He likes the glowy toes

They did a good job playing together today

“Get over on your own side of the crib, or you’ll get a taste of this backhand”

“Naaah, just kidding, I love my little brother”

The doctor today says that Brendan is ready to ship out to the transitional facility. The rest of the team wants at least a day or more to make sure he does not have a setback like the last time he was on the home vent for a few days. They also have to make sure a room is available at the new place and clear all of the insurance stuff.

He will go to the other place while his take home equipment gets ordered and delivered and Bill and I finish trach and ventilator training and CPR classes. We have a nurse to interview too for his home care. He is moving on toward coming home! We have so much to do to get ready!!

Well it seems like the push is on – Brendan is doing very well plus he has a less conservative doctor, so starting this morning, Brendan is on Trilogy around the clock and will only stop for his trach collar sprints for an hour twice a day. Since he started all this Trilogy time, his chest xrays have continued to improve and he is still growing (15lbs 8oz today!). He is going in the right direction, but I am still nervous about celebrating just yet. We are just proud of him for his progress and can’t wait for him to come home.

Just for a change today, the nurse pulled out his blue recliner chair.

He likes his recliner, but in less than an hour he was so drenched in sweat. It just doesn’t breathe, so we had to take him out.

Trevor went to the hospital today because he has an important job to do, helping Brendan with his physical therapy!

The boys made lots of silly faces at each other!

Man, holding your own head up is tough with all this cheek!

Ahhh, that’s better!

Trevor worked hard too, he was so ready to go home and take a nice long nap.

The physical therapist did a lot of work with Brendan today, rolling from side to side, grabbing toys, and exploring his feet. He really has started to love to kick his legs and is trying to figure out whose toes are those. You can also hear the joyful noise that we will live with when he comes home – the beeping alarm of his Trilogy vent. (This time it was beeping because he was breathing too fast)