Yep. That's right. Had to make another trip to CNMC because of bleeding from the trach. Took almost five hours to get admitted and finally got into the Pediatric ICU at 12:30 a.m. Spent four days there with no bleeding so the surgeon called off the scheduled surgery just as he was ready to be wheeled from pre-op to the operating room. Talk about a close call!
The doctor said he thought the risks of surgery (anesthesia, infection, bleeding) outweighed the risks of leaving things as they are for now. He also thinks that the bleeding may not be from the tissue lump in his airway and instead may be from nicks and scratches near where his trachea branches to his lungs, caused by suctioning too deeply and with too much force. If that's the case it is a very solvable problem, which is good of course. The flip side is that it means someone on his care team has been F-ing up and putting him in peril simply because of laziness and inattention to detail.
We spent a night in the main PICU with a bunch of other really sick kids before we got a private room. Made us realize how well Zachary is doing despite all his challenges. He was definitely the healthiest kid there but a hospital policy required him to be in the ICU because he's on a ventilator. We were scared to death he was going to get sick from some hospital germs so we're happy he's home and seems back to normal.
The experience that first night also made me wonder how we'd be coping if he wasn't doing so well or if he had some permanent and profound mental or physical disability. There were so many broken kids lying alone in their beds who looked like they were in agonizing pain, and would be for the rest of their lives. It got me thinking: What would we do if one of those were ours?
Would we be able to remain upbeat and optimistic if we knew things might not get any better? Would we stay at his bedside 24/7 or would we have left him there by himself? Would we question our decision to avail ourselves of the most aggressive life-saving measures early on when it looked like Zachary wasn't going to make it? Would we love him the same? I'd like to say I know the answers to those questions without hesitation but that wouldn't be true. It would take some soul searching and deep reflection. I pray for those kids though and hope their parents are at peace with the decisions they made.
We also saw some of Zachary's doctors and nurses from his NICU days. Everyone seemed shocked at how big he is and how good he looks. And they all commented on how cute he is. (They all said he looks like me, which is either really good for me or really bad for him). We also got to chat for a few minutes with one of his old NICU residents, who was one of the finest doctors we've ever met. She was so wonderful to us and him during his long hospitalization and was a tremendous and aggressive advocate for us. We were fortunate to have had the benefit of her talents and compassion.
So for now we are back home getting back to our routines and hoping we don't have to go back anytime soon.
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