Jack is still with us. We’re sitting with him in his new and improved PICU room. We are celebrating his presence and in some way, mourning too. Dr. Piatt informed us that the nerves related to swallowing could not be saved. They were removed entirely. While we had hoped that Jack would be able to regain some of the swallowing function with time and therapies, that is now out of his reach. He will permanently need a feeding tube and a trachea tube. That is now a certainty. His hearing in his right ear is currently gone, though he may be able to gain some hearing back again. Dr. Piatt seemed particularly regretful when he reported that the facial nerve has likewise been damaged. His right side will “look funny”.
Let me reiterate. Jack is still with us. He is a lucky, strong and resilient little boy. The tumor may have gotten some things but it did NOT get Jack, though it could have. Every parent wants the smooth road for their child, and we’re mourning the difficulties ahead. But there is a road to travel, thankfully, and we’ll make it a joyful one- singing the Bonanza theme song down it all the way.
Please keep those lights burning for Jack tonight, everyone. He has a rough road of recovery ahead over the next week, and we have to pray that he stays stable in these delicate post-operative hours.
Let’s look at all those lights you have been burning and think of them as birthday candles. In our family from now on Feb 27th is going to be Bounce Back day. It’s the first day of the rest of Jack’s life, and my God, we are so grateful.
Good job, Jack!
I’ll update again tomorrow. Thank you all for sharing this journey. It’s what got us through the long hours of waiting.