It feels like we’ve been home a lot longer than 6 days, maybe it’s because Isaac has had such an awesome 6 days He hit the ground running, the fun hasn’t stopped. Isaac has had a blast at therapy, and enjoyed several evenings running with his cousin Brookyn and enjoyed a visit with his friend Ryan yesterday.
Today we visited an “indoor playground” – he LOVED it. Just when I think he can’t be any more amazing, he does it…… he ran through the door and took off for the climbing equipment without looking back – he had his nurse and I climbing and sliding to keep up (with a suction machine hanging from our shoulder!). Every bit of soreness was worth it – anytime we can give Isaac a chance to be free and brave it’s worth it. So much of his life is not normal – he spends a lot of time playing in hospitals, making friends in hospitals, doing therapy in hospitals – you see the theme…. It makes us appreciate the the things that normal kids and families do so much more. We’re looking forward to a few good air quality days here so he can go out and ride his scooter and play with the neighborhood kids who are slowly adjusting to all of his “accessories”.
I called MN today to give a report on Isaac’s chest tube output – so far about 2 teaspoons, nothing since last night – hoping that is little enough to get the tube out! They will let us know tomorrow, then there will probably be supplies that need to get to us in order to do it in a Dr. Hess approved manner. We are so lucky to work with a surgeon who is willing to let us do things at home that in all honesty – we really shouldn’t! In the past we have removed a PICC line, and a chest tube right here in our living room – kind of scary, but worth it to avoid ONE more trip to hospital to have it done.
If things go according to plan we’ll have a few months (hopefully!) before our next trip to Minnesota – from now on we would only need to go for esophageal dilations, in Isaac these are every 2-3 months. Essentially the doctor blows up a balloon in Isaac’s esophagus, stretching it where it was connected and tends to scar. Pretty simple procedure – but as we learned this past fall, it is one that should only be performed by Dr. Hess. So, our 3 day weekends in Minneapolis will continue for as long as Isaac needs them to – and we’ll enjoy the opportunity to catch up with friends and show Isaac off to the doctors and nurses that are responsible for how well he is doing!