She's had two swallow studies - one during her first round in the hospital for failure to thrive due to vomiting at 19-23 days of life and the second during our time at Duke. Both showed direct aspiration with water-consistency liquids. We have been thickening her feeds since 3 weeks old and that has definitely helped with the aspiration (prior to that she would literally choke down the bottle and promptly return it in exactly the same form, mere minutes - and sometimes seconds - later).
What we haven't been able to control with any real precision is her vomiting. Quinn completes her power hour (upright and stable for 60 minutes for each feed), come hell or dirty diaper and that helps, but it's in no way a guarantee and there doesn't seem to be any true pattern to when or why it comes back up.
Miss Q, less than 6 months old, holding her own bottle
As with any neurological disorder, swallowing and sucking will inevitably be a skill she will lose. So that coupled with her existing issues - weight, indirect aspiration from the vomiting - have prompted us to consider a gastrostomy (or g-) tube coupled with a Nissen fundoplication sooner than later.
A G-tube is a tube that is placed in the stomach to deliver food and nutrition directly through the abdomen, bypassing the esophagus entirely (eliminating the possibility of direct aspiration from eating). It's a fairly simple procedure. The Nissen fundoplication is a bit more complicated (as the far more difficult-to-spell name implies!). The lining of the stomach is used to effectively close off the esophagus at the entrance of the stomach, not allowing vomit to get through. It comes with its own set of complications but it would all but cancel out the vomiting.
Both together require four scheduled nights in the hospital at the end of January - longer if any complications arise, of course. Both together will offer Quinn a better quality of life - no more power hour, which she has come to despise; no more discomfort from the severe vomiting episodes; considerably less mucus and congestion since there should be considerably less vomiting.
Both together are an admission that this disease is going to win. It's a 'giving-in' of sorts - acknowledgement that we are powerless against what is to come, even if it is only mildly here right now.
Both together are our last shot. Right now, this is the only intervention we envision taking for Quinn. Because there is no treatment and there is no cure, there is nothing else really to be done - at least in our situation, for our family.
We're going to have to explain to Colin and Reid why Quinny suddenly eats through her belly and not through her mouth. Have to transport all of her equipment wherever we're going. Have to alert the crew of the Disney cruise we're taking in March to 'do' Disney. Have to teach her how to sleep on her back when all she's ever known is sleeping on her belly because of the swallowing / choking issue.
Have to admit that our baby girl really is terminally ill.
|the three musketeers, celebrating the re-opening of our Super Target|
- our home away from home
It's been a long week and this decision came on the heels of another major decision just a few days earlier. The stress of Hurricane Sandy, immediately followed by a Nor'easter, Quinn's double ear infection, my sinus infection, juggling no school for the kids but work for mommy and daddy, major decisions surrounding the trajectory of our family's life for the foreseeable future, and now this.
And it all seems to become too much - until I see this face.
|at Cohen's Children's Hospital, following her surgery consult|
Then it's suddenly ok again.