the speed bump…..

We’ve hit it, the proverbial speed bump Dr. V warned us about. After that beautiful esophagram we kind of figured we had one foot out the door…… until Sunday night.
Sunday night spit started slowly coming out of a tiny hole under Isaac’s trach. By Monday morning it was pouring out. Dr. V came by Tuesday and confirmed our worst fears, Isaac’s new colophagus has a leak 🙁 Dr. V was sure to reassure me that they see this frequently, and it is merely a bump in the road. The flow of saliva hasn’t slowed this week, it is too early to scope him, so for now we wait.
Typically these holes close on their own, but typical doesn’t always apply to Isaac!
In other bump in the road news – our boy lost his voice completely this weekend and so far it has not returned. It’s been tough, that’s how he communicates. We are working through it and had a great talk with the ENT here last night (who happens to specialize in voices!). He said it could be damage from surgery – it may be that Isaac just needs to figure out how to talk, or that they may need to fix it. He promised he will fix it.
Isaac is otherwise rocking this recovery. He had his central line pulled today and has been off of IV pain meds since Tuesday. He has started taking some shaky steps, and even got a Wii in his room today 🙂
In spite of the speed bump, we are grateful. Never once on this journey have we felt hopeless. We know that no matter what curve balls Isaac throws, this is where he should be. The team here is remarkable – and kind and caring.
For now we wait, as patiently as a 6 year old possibly can.

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