After more than a year of massive leakage, the lady today (whom remembers us!) said that Andi might have "blah-blah-blah (medical term / foreign language)." Of course, now at this hour, I cannot remember what it was she said. Therefore, let me gross you out with the gory details. It's possible that the "red junk" filling the g-tube hole is not granulation tissue (a natural occurrence in g-tube holes), but it might actually be her stomach. Her actual fricken stomach might be coming up the hole. The only way to tell what it is, is to do a biopsy. So, she put some numbing agent on around the button, then she removed the button, got a sample of the red junk, and then put the button back in and filled it to maximum fill level, all while I tried to calm Andi down. She cried because it hurt. * insert my red flag here.* They got to hear Andi mumble through her tears, "all done!" several times.
If the results show it's her stomach, then they want to do the surgery again, and stitch up the current hole. This new placement is no guarantee that it wouldn't happen again. It'd be another surgery. Another hole. Another scar that she'll have to explain. We're also supposed to be having a new swallow study done soon. I already told the team we worked with today that if by chance we get lucky and the swallow study shows she is no longer aspirating, then Daddy Bean and I have already made the decision long ago that we're pulling the device and moving on. Maybe we're due for some good luck?!
Sadly, their scale showed Andi only weighed 6.5 kilos - which I'll spare you the conversion chart, it's only about 14.5 lbs. That's a big difference from the 14#15oz that we weighed in last week at her Dr's office.
We briefly stopped in to say hi to our nurse friends on 10N, where we spent most of last summer. They marveled at her hair, her size. It was fun! A friend of mine gave me a great idea I want to steal. She said that ten years ago she was hospitalized being extremely sick. She goes back every year to say 'hi!' and 'thanks!' to the nurses on the anniversary of when she was there. This past year, she went in to see them in her scrubs, with her badge & credentials, as now she is in nursing school. Prideful, she was able to show the nurses how much impact they can have on a life, and remind them of it each and every year. I think that is something Andi should start doing. We made her heart surgeon an update card, uh, that I have yet to actually mail..., but I think all the nurses (and there were a gazillion of them), deserve not only an update card and wave or a smile from Andi, but a yearly reminder of the impact they have had on a Bean. In between those yearly visits, a card for all of them (especially the night nurses!) to see her grow and change, but remember her out of the thousands of kids they see each year. I mean, they ALL remember her, *wink*, but... I want to keep them included in her wellness, not just in sickness. Wow, did that sound like reverse wedding vows, or what?! Eak.
We have several days to wait for the biopsy results. Then a meeting next week with her Dr. and one week from today, the ear tubes inserting surgery. A lot going on!