The Adventures Continue

So there hasn’t been a lot of news coming out of Nyanaland as of late, and this might be one of those instances where no news isn’t necessarily good news. We’ve been kind of quiet here lately because we’ve been kind of busy, and not all in a good way. Not all in a bad way, either, but definitely in a wow, that’s a lot to put up with in a month kind of way.

I told you in my last post about the J-tube that we added to Ny’s tackle, and how this newly advanced tube that was meant to eliminate the risk of vomiting and aspirating had, in actuality, perpetuated these episodes. After about a week of daily spit-ups—each accompanied by choking, gagging, desatting— and a week of sleepless nights for all three of us, we finally got her in to see Dr Dee in the respirology clinic. And just like she had been two weeks prior, Nyana was admitted on sight for observation; she spent two nights in the ICU as we started her on a dose of anti-reflux medication and tinkered with venting and draining options. It’s been a week since that second PICU visit and she’s a different baby than she was two weeks ago—the puking episodes have subsided (not stopped entirely) and her saturations and work of breathing are better than I’ve seen in weeks. The mother in me is relieved that we solved a potentially serious health issue; the human in me that loves sleep is elated that we fixed whatever was causing her to wake up crying at least twelve times a night.

Somewhere during the course of October we celebrated Thanksgiving and Don’s birthday, and we had a family photo shoot done on the beach. Yesterday I went to pick up the photos from the photographer, and was blocks away from his studio when Nyana’s nurse called me. I could hear Nyana screaming in the background; she had pulled out her J-tube. I hurried home while Martyna inserted an emergency foley catheter, then together we bundled up Ny and made the trek across the city to the emergency room at BC Children’s. We arrived shortly after noon; poor Martyna was only 45 minutes into her shift when Ny yanked her tube.

Martyna stayed with us until her shift ended at 4pm, and finally, shortly after five o’clock, Ny and I were called down to radiology to have a new tube inserted. Unlike previous tube insertions where I’ve simply dropped Ny off in the room and then roamed the hallway for 15 minutes listening to her scream, this time I was handed a lead vest and asked to stay. Asked to hold her arms down while they guided the new mic-key into place. Because it had been more than five hours since the tube was pulled, and because our emergency catheter was a smaller size than her new j-tube, the stoma site had started to close already and the tube didn’t want to slide in easily as it normally should. There was screaming. There was blood. A dilator was used. There was more screaming. It wasn’t pretty. But less than twenty minutes after wheeling her into radiology, I had Nyana tucked comfortably into her stroller, drifting off to sleep as I pushed her up the street towards the train, towards Don’s office to pick him up at the end of his day.

So it’s been a busy and adventurous few weeks, but busy isn’t all a bad thing. See for yourself.

Mr Foodpump comes with a backpack to make continuous feeds more portable.

Ny chomps on a Qtip after our daily stoma cleaning.

It's all about standing these days. You can see the bile bag pinned to her back here.

Don teaches Nyana the important things about Thanksgiving.

Thanksgiving 2011. She enjoyed some carrots, some stuffing, a bit of pumpkin pie, and gnawing on turkey legs.

Sofie finally gets brave enough to say hi to Nyana.

Ny isn't sure what to think about being graduated to the big girl bathtub.

Nyana and Mum cuddle after getting home from the hospital with a new J-tube.

Sneak peek at the photo shoot on the beach. More to come soon. Click the image for a gallery of more images.