Nikki had her first of hopefully many tube free moments yesterday. All of her chest drain tubes are out. The nerve blocks have been removed. She has begun to test out her new lungs without the aid of supplemental oxygen. And the doctors have transitioned her from a 24 hour antibiotic drip to an every eight hour cycle. Granted, those drugs run three hours at a time, but her body is not constantly trying to deal with the continuous infusion of chemicals.
Some may remember this switch from the constant drip to the three times per day regimen as being one of the turning points from her hospital stay and cleanout in April. When that drug delivery cycle was changed, that’s when she started to get her energy back. That was right before we went on the fateful Mother’s Day Bike Ride and Nikki fell off her bike. She tipped over. That little accident landed her on the couch for six weeks with the knee injury and kept her on the IV drugs until she was able to get back on a decent exercise schedule to help work her way off the meds.
Since we’re on the topic of bikes, remember what it was like to ride your bike for the first time? Or that first time riding without your training wheels? What about the first time you practiced down the street, out of your parents eyesight, until you were good enough to ride by and yell, “Look Ma, no hands!” Those little paws of yours were probably just a few inches away from clenching back on to the safety of those handle bars, but they were still off. They weren’t touching.
Yesterday, when Nikki realized this was the first time since her transplant that she wasn’t bound by any tubes, she lit up like a Christmas tree (or Jay’s Menorah). You can see it in her eyes. At times, the excitement is too much to handle.
The real big deal is severing that oxygen tube. We have heard stories of patients that absolutely did not want to give up the oxygen tube. It has been their lifeline for years. Without it they wouldn’t survive. That is, they wouldn’t with those old, diseased lungs.
She has lived with this tube attached by a nasal cannula around her ears and protruding through her nose nonstop for the last 6 years. If you’ve been to the house, you may remember that we strategically placed an oxygen concentrator right in the middle of the dining room. It didn’t really go with the décor, it was loud, and it cranked out heat; but it had to be there. That way, her 50 foot tether allowed her just enough freedom to get upstairs and barely into the shower or downstairs enough to get to her laundry room. Whenever I would come home, I never had to guess where she was in the house. I could just follow the tube. When she wanted to break free of that 50 foot vinyl chain, she had to lug around that backpack with a portable oxygen tank. Those tanks would hopefully allow her a little freedom for a few hours. If she was gone longer than that, she needed to carry extras. They are not light.
We’ve spent a lot of time in the hospital these last few weeks, and I know she often wonders about her O2 levels. She is constantly looking up at that tiny little monitor in the corner to see how her oxygen stats are doing. And now, the doctors are telling her to wean her way off of that life giving tube? Ha! As much as she desires it, this task won’t be easy. Just like the little kid on the bike giving up the safety and stability of those handle bars, we see Nikki hesitating at first. What if her stats fall? Just like the kid who would clutch for those handle bars, she is ready to grab back on to the safety and stability of that tube. I can only imagine what she might be thinking.
Will I get hurt? If I’m sleeping and my oxygen stats fall, will it affect me? Maybe I’ll get brain damage? Will I simply pass out due to lack of oxygen or forget to keep breathing?
It turns out, she’s been practicing. She’s been closely monitoring those O2 stats. Yesterday, when she was talking or exercising, she had to go back to the security of the tube. This is normal. But today, she went the entire day without the extra oxygen.
As I’ve mentioned before, these moments for Nikki are a big deal. Just like all of the firsts you remember as a kid. If you are a parent or grandparent, it may be ancient history, but you may remember seeing the joy in a child’s eyes. Nikki is like a kid again. She went through this life saving transplant and she has a shot to experience a whole bunch of firsts – again.
Nikki's New Lungs 