Apologies to the loyal blog followers, no photos to share today. I am doing a quick update from my phone from the hospital.

Murphy’s law punched Brendan again today. The new supply company showed up with the ventilator like they promised. The rep was friendly and helpful. But even though it was the exact same vent machine, they use a different manufacturer/brand of tubing and valves that go between the machine and Brendan. He has spent all these weeks slowly adjusting to his equipment and then they change the valve and he had a very difficult time. When he started to fall apart, we switched him back to the tubes and valves from the first company and he immediately recovered. So now it is another red tape mess to try to get him the right pieces to go home. At least I got to experience some emergency troubleshooting with nurses for backup.

Other than that mess, he is doing great. He is sprinting off the vent now with lovely numbers on the monitors. He was awake so much today that he should sleep very well tonight. That will at least be one of us!

Brendan had to go back to the big hospital this morning! It was not back to the ICU, he is just doing too well for that nonsense! He just had to go to the clinic to see his pulmonologist. She thought he looked great, sounded great and is not planning to make any big changes until he gets home and has some time to relax.
She took away the Atrovent inhaler, and wants to start to peel back more layers of medications after he is home. Sometimes their side effects can be worse than their benefit.
She added twice a day CPT (Chest physiotherapy) which Brendan ought to thoroughly enjoy! It is basically firm patting on his chest and back with a cupped hand.

Brendan’s same transport team that moved him last week delivered him to his clinic visit. He gave them dirty looks at first!

Baby Delivery Van:

His nurse put him in this purple “hospital gown” for travel.

I promised him he would not have to wear girly nightgowns at home.

Trevor spent the morning with Dad. Bill got to experience the pleasure of feeding Trevor his oatmeal and prunes. (which is why he is naked and waiting for me to get to his bath time!)

It is really hard work to catch fish in outer space while naked. Trevor was exhausted!

I am getting the blog done early today because we have a giant list of things to accomplish before our 24hr stays at the hospital. Brendan was sleeping too when I left. He had such a big morning and handled it so well, not a single tear!

The new home vent company is on track so far and will be delivering supplies tomorrow. Fingers crossed it all continues to go smoothly at this point!

Today was just cruel. I spent all morning with my phone ringing off the hook, arranging appointments for everything to get set up and trying to work it all in to a very busy weekend. Then I headed to the hospital.
Because all of the home equipment companies were changing, I decided to call Aetna to make sure that everything was still in order. Surprise surprise! This hospital’s own home service company that wanted to take over Brendan’s equipment deliveries and ventilator rental was an out of network provider.
That company had made the assumption that because they had 2 other kids this month with an Aetna plan where they were in network that they would be covered for Brendan too. He has been using their ventilator now all week and they had already come in to do training for me. So all of the appointments I made got cancelled and now they have to all be set up again with the correct companies.
So no big deal, right? Not exactly. The company that is covered does not necessarily have the right equipment and now they are working on last minute notice over a holiday weekend. It sometimes takes two weeks to order the ventilator, and if that is the case, Brendan would have to stay in the hospital and wait!
This was my reaction too:

Fortunately, the new company thinks that they can still help us achieve the Tuesday homecoming. But if things aren’t just right, it could be Wednesday. Or longer. It just blows me away when these things happen. If I hadn’t checked, we would not have known until the first bill was submitted and then we would have had a huge surprise in the mail. The assistant director of the hospital was very fast acting and worked very hard to get this all straightened out, we are grateful that she was able to still pull it together. It just proves I can never let my guard down for a second.

All that chaos aside, Brendan was very happy to see his family today.

He really loves his Daddy!

He did very well today with lots of handling, full bath, ostomy change, sprinting, and trach care. His home nurse came to visit and he seems to like her. She is ready to start on homecoming day and will even do a couple of 12hr shifts the first few days to help him get started at home.

Trevor always gets to play with cool stuff when he visits Brendan!

It has muddin’ tires and a lift kit, let’s go!

I see your checkin’ out my sweet ride

Trevor was smacking the button wondering why it wouldn’t turn on!

Trevor has a new phone, thanks to Gramma. He loves when it says “Hello!” We got a package full of lots of fun things for the boys and the dogs and the parents. It is just what we needed after such a frustrating day! Thanks Gramma!