who’s the boss??

Clearly, the answer is Isaac! We all know that this little thing called a capping trial has to occur for Isaac to get his trach out. You may or may not remember that just over a year ago Isaac was successfully completing his capping trial and had a date to get his trach removed (forever!!)…. 5 days before that date he started getting sick, we later found out about that hole in his esophagus and lung and scrapped the whole decannulation (trach removal)….
We’ve been working really hard to get him ready, and finally got in touch with his surgeon last week – they happened to have an opening tomorrow and scheduled him for a look at his airway and an in hospital trach capping trial – yay!! When given enough notice, Isaac finds a way to sabotage as much as he possibly can – so we started telling him about this big event on Thursday. On Friday morning he woke up, sick! Seriously – we found out later in the day that he had strep throat and an asthmatic reaction to allergens – mama’s childhood asthma 🙁
We emailed his surgeon, but only told him about the strep – hopeful that over the weekend we could get the asthma under control and sneak in tomorrow for that bronch…. then we were reminded that this is Isaac we are dealing with. His asthma is not too well controlled today, though better than it was Friday. So, the trach capping has been postponed.
The hardest part of postponing is not knowing when another time will open up, Isaac has a pretty great surgeon who is booked for the next 100 years, so we have to do a waitlist kind of thing. Isaac was so ready for this a week ago, it’s always disappointing when it doesn’t happen – but we want him to be in the best possible place, and this just isn’t it.
It was a bit of a roller coaster weekend, hoping and watching him. It seems when I get into a poor us state something always comes my way showing me how lucky we are. I started following a blog recently, written by a pretty gifted mom writer – about raising her special boy, Gavin. Gaving died this weekend, and his mom has shared the story with complete grace. I cannot imagine the loss and heartbreak, I read her updates and my heart just sighs. At the same time she is so positive and uplifting it is hard not to smile.
Just when we think we have it rough, something comes along and shows us how lucky we are. If you care to meet Gavin check out http://www.kateleong.com/ – this family is nothing short of remarkable.

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