First, let’s start with a list of everything AMAZING that Isaac has done this week…
• On Monday he decided to stack soup cans in even stacks. He realized that he had 2 stacks with three cans each, and one single can on the end. He quickly demanded that I get more soup cans to make his third stack “3 high”!
• On Tuesday we played hide and seek. Isaac’s first hiding spot was simply standing next to a chair with a towel his daddy threw over his head. As mommy “looked” everywhere for him we listened to the most AMAZING laugh coming from under that towel! Isaac quickly found better hiding places for his turn, and loved counting to 10 (or 12, or 15 depending on his mood) and using his IPad speaking program to announce “Ready or not, here I come”! The joy in that laugh will stick with me for a long time.
• Also on Tuesday – after mama told him “I love you” for the 75th time he responded with “I love you too”!
• Lastly – also on Tuesday we went to the grocery store and I somehow ended up coming home with play doh, gold fish and mini m&ms! We got to work with our play doh and Isaac requested an eye for his creation – I made the letter I instead. He loved it and instructed me to make an s, an a, another a and a c – my son just spelled his name! And in case I missed it he pointed out that he has “2 a’s”.
All of this amazing came at just the right time, as we have been doing a lot of thinking about that trach and when to start working on really getting it out. For a long time we have been slightly consumed by getting Isaac’s trach out – as it is one of the things that causes the greatest disruption in our lives. Because of the trach Isaac is at greater risk for infection and illness, we are unable to leave him with a babysitter or any other caretaker – only nurses, and it makes people think he is much less capable than he is. In getting wrapped up in getting the trach out we have lost sight of some things…. there has been serious talk amongst ourselves, Isaac’s pulmonologist (lung doctor) and pediatrician about how ready his cruddy right lung is to do the work required of it if the trach comes out. We’re really just not sure it can handle it. He will have to work harder to breathe without the trach, and if he gets too tired he could potentially collapse his airway – putting us pretty much back where we started from.
This isn’t to say the trach won’t come out- it will. We think it is not going to come out in a month or so, as we were hoping for.
Isaac’s pulmonologist pointed out the last time we saw him that Isaac is finally in a good place – he is talking, and kind of healthy, and playing and going to school and enjoying himself more overall – why mess that up? What has come out of this a “let’s give Isaac’s lung more time to heal” attitude. We plan on contacting his ENT (airway) surgeon to get his take – but really, we like the way Isaac breathes right now.
We are hoping for a few more months of healing – oxygen at night to encourage the right lung to heal, lots of breathing treatments – and lots of playing!
So, it’s disappointing to accept that OUR timeline doesn’t match that of Isaac’s right lung. However, with all of the amazing we are seeing it really is hard to be disappointed for too long. Who knows, we may hear back from the surgeon and decided to try capping in 3 or 4 weeks, or we may push it back for a few months – what really matters is just how far Isaac has come 🙂