Throughout his care, the specialists had often called Sick Kids and were actively following a protocol created by them. However, Mac also actively reinterpreted it too. The swallow study was one of those deviations--Sick Kids insisted that babies couldn't drink from a bottle with a breathing tube in, but Jairus did it. They also keep, or kept, their PRS babies in hospital for an average of 6 months, but Mac let us go at 2 months. I was always grateful we were close to Mac and not Sick Kids.
By the time the big day arrived, Jairus' ENT had hinted that she wasn't completely comfortable with him leaving, but by that time, it was too late. Everything was in place.
It was such a wonderful, yet scary day. I was so used to just sitting in his hospital room that suddenly, I didn't know what to do with him!
Leading up to the discharge, Jairus went at least 6 hours a day without his breathing tube. After he came home, the ENT would up that by an hour each week.
It was a very tiring first week as he was feeding by tube every 3 hours and while I was used to that during the day, I had been spoiled at night since the nurses did it. He wouldn't even wake up for his 3am feeding so after about a week, the pediatrician agreed to cut it out and add the volume to the other feeds. I continued to pump milk for him, determined that he wouldn't get anything but breast milk. I took him to my lactation specialist soon after he came home and she had me try a few techniques and some equipment, but it was inneffective. He just did not have the strength or coordination to nurse. We kept trying him with the Johnson Mead bottle before every feed to try and exercise his jaw.
Soon, Jairus was going all day without his breathing tube. It was awful to put it in at night--he hated it. By now, we knew how to change all his various tubes, but we weren't always confident to do it--especially at the beginning. I'll never forget the first time we need to replace the weighted ng-tube. Jairus had been in to see his ENT and she had changed his breathing tube out with a different type, and then they had put the ng-tube down. I watched the nurse check the placement and recognized the way the syringe popped back. It wasn't in right, but I wasn't confident enough to challenge her. I went home instead and, of course, his feed wouldn't go down. We ended up back at the emergency room for 6 hours, waiting for someone to pull the tube out, discover it was kinked, put it down again and then send Jairus for an x-ray (even though I insisted he'd never been x-rayed before the check placement). He missed 2.5 feeds and was not a happy camper. I vowed that the next time, I would do it myself.
I got my chance 2 days later when I woke up and he was lying in his bed, gleefully waving the tube around. It was just the beginning of 10 months of changing that tube.
Jairus went back into Mac about 2 months later for a sleep study to see if he was truly ready to go without his breathing tube full time. It took two days, but he passed with flying colours. Unfortunately, it ended with him coming down with pneumonia, a highly stressful turn of events that included projectile vomiting, chest x-rays and numerous attempts to draw blood, ending with a heel prick (why don't they listen to the mommies?).
We were finally starting to establish a 'normal' life though and it was so nice.
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