After two years of on-again-off-again treatment, the one thing that we have managed to avoid for Lucy is the vaunted NG tube. I honestly don’t even know what NG stands for, but you’ll recognize it as the tube you often see sick kids have running through their nose down to their stomach. It’s fairly common as it helps them get nutrition and oral medicine at a time when their stomachs and throats want no part of it.
As you can probably tell by my ominous intro, we finally relented and allowed them to put one in today. The crazy thing is that it’s not exactly needed at this stage. Lucy will always hate oral meds, but she’s still eating well. The doctors in KC feel that getting her NG tube at this stage is preferred because, if you wait too long and the inevitable side effects such as mouth sores or mucositis set in, the option may no longer be on the table.
The process was kind of a microcosm of the whole BMT experience – she was feeling good today, friendly and playing, and we interrupted that by a procedure that led to gagging, vomiting and generally pissing her off for most of the night all for the long term benefit.
It will probably take about 18-24 hours before she’s totally comfortable with it (crossing fingers because she hates it right now), but Kenda and I are confident that we will be thankful we did it when she eventually refuses food and medicine. Not having to worry about whether she got the full dose of oral Tylenol or stressing out about how many calories she had today will be a welcome change.
We’re closing in on 24 hours before her “super cells” are introduced, but surprisingly she is still doing well. Aside from some outbursts and some clinginess to mom, she’s not showing major signs of the looming side effects…yet. We’ve known all along that it will hit her hardest right around transplant day and the weeks following, but it’s still hard to fathom that she’s feeling well after you witness the heavy doses of Cytoxin she’s received that past two days.
Regardless, we’re all just thankful we can go to bed tonight without waking up for the 4:00am bath we had the past three nights.