Trying to figure out how to arrange a babysitter for our boys is a real challenge. We don’t have an answer. So Bill and I went to see the new Star Wars movie today and left the boys at home. It is good to not worry about avoiding spoilers so much now. We both enjoyed the film, even though it pushed a little too hard on the “nostalgia button”.

The boys are getting over the cold part II. It has been runny noses and extra suctions, but nothing too bad. They will hopefully be healthy soon. We did go to the aquarium to try to get them out of the house for a while.

This is a fish they call “Puffer Buddy”.

Trevor says they are making lobster soup. Some for me please!

Trevor in a bubble

What? Turtle butt

Shark!

They have a playground at the end. The boys played until Brendan needed oxygen and we went home.

You didn’t honestly believe that we left the boys home alone? We had to go see the movie in shifts. I went to a morning show while Bill stayed home with the boys and Bill went in the afternoon while we went to the aquarium. Such is the way of our life now.

And for a brief rant about babysitting: It is more complicated than most people assume. We do have respite care benefits provided by Brendan’s disability insurance and we could get a nurse. The nurse is not legally allowed to care for Trevor, so we would have to have a second person watching him.
If we called for a nurse, they would send us someone we have never met before. Or maybe we would interview them ahead of time and they would come by. They may have dealt with trachs before, but most of them have not ever seen a case like Brendan.

What happened today when Bill was home with them is that Brendan and Trevor had a fight about some Lego figure. Trevor got frustrated and took it out on Brendan by yanking his oxygen line. Brendan’s trach came out. Ever since the failed decannulations, trach removal is a big deal. Brendan shrieks and fights and panics about having it put back in. It takes a monumental effort and a practiced hand to get it put back. Brendan starts to turn blue from screaming.

If a brand new nurse was working (some of the ones that have been sent out have never done a trach change!), and she could not pin him down and get the trach in, she would call 911. It would just go downhill from there. Even the nurses and doctors in the emergency rooms have to ask us a million questions to understand Brendan. What if he went in without us?

It makes my head throb and my stomach turn. So we see movies in shifts.