Sorry for such a long hiatus. I know it is time for an update when I start receiving numerous facebook and email inquiries!
The feeding tube transition has not been simple, but that is par for the course with Virginia.
There are so many questions right now with her, but I am going to keep this as simple as I can. The bottom line is that the feeding tube has not helped Virginia's cough. This is a tremendous disappointment, but I do have hope that we will get to the bottom of it yet. (and I'm not just saying that!)
We were able to go a few days giving Virginia very little by mouth, and her cough was just as bad, especially in the morning. We have spent hours with lots of different doctors over the last seven days, and they have collectively come up with a new theory. It's not a new one to us- but not one that we gave as much weight to before we did the feeding tube.
Since last April (about when the cough started), Virginia seems to have more drool. She has always drooled a little more than my other two kids, but now I have to change her shirt several times a day. I took her to the dentist and oral surgeon last summer to see if they could explain her excess secretions, but they could not.
When we were sitting in Dr. Mary's office on Wednesday, I was pretty close to despair over the cough. It is deep, wet, and jars her little body all day long, but especially in the morning. Mary sat in the office with us for an hour and just watched Virginia. She decided she isn't aspirating/coughing because of eating, but what's happening is she's not swallowing, so all the secretions build up, and when she does swallow, she is coughing a ton. Maybe there are more secretions than there were a year ago, maybe there aren't, but the bottom line is, Virginia only swallowed twice in that hour.
She obviously swallows when she eats and it doesn't seem to hurt her. Why isn't she swallowing the rest of the time? It's a mystery.
Ok, remember in April when she had seven seizures in one day? We ultimately decided those seizures were triggered by an allergy medicine she shouldn't have been on, but not before we increased her seizure medicine dose. The doctors think that maybe this change is sedating Virginia to the point that she's not swallowing, or has caused a subtle change in the amount or thickness of her secretions. She doesn't seem sedated to me, but they said that could still be the case.
I asked the neurologist about this in June (because Findley and I had already been tossing this theory around), but he said no way. He has tons of kids on this drug, V isn't on a very high dose, and he doesn't think it has anything to do with the cough. But he did say we could go down on the medicine if we wanted to, but he would say 'I told you so' if she has another one. (I really like our neurologist, by the way. I have teams of doctors, and he easily makes the A Team).
So when our pulmonologist (who along with Dr. Mary is Captain of the A Team) suggested in August that Virginia was aspirating and the swallow test confirmed it (to a degree), we went ahead and scheduled the g-tube in order to protect her lungs, attributing the entire cough to the aspirations.
Apparently it isn't that simple.
I am not sad we did the tube. She would have needed it eventually, there is no doubt she is aspirating a little bit, and it will definitely be safer to be able to give her most of her nutrition via tube. Thinking she was aspirating all the time may have forced us to do something we might never have had a peace about otherwise.
But what to do about the cough?
Starting tomorrow, we are going to go down on her seizure med by two-thirds over the next four weeks. That is a lot! I am a little scared, but feel like we have no choice. Please pray that this helps her cough dramatically and that she doesn't have any seizures.
If that doesn't work, we are going to add a drug called robinul which helps dry up secretions. This isn't my first choice, but it is potentially a very helpful option for us. We have also put her mattress on an incline to see if that helps with the secretions during the night. I don't think she swallows at all at night- her pillowcase is soaked in the morning and it takes her almost three hours of constant coughing to clear her nighttime build-up.
As far as getting nutrition in her via tube, it is proving next to impossible. She can't take more than about four ounces of pediasure without feeling sick (can you blame her?), so I am back to feeding her mostly by mouth and putting her liquid in the tube. It means most of what we do around here is still feed, but I think eventually it will get easier. I honestly don't care if we can just shake the cough!
Thank you for your prayers. Honestly, Virginia should have struggled with lung issues her whole life, but she hasn't. We are hoping to get back to that point.
On another note, my mom was here for the fourth time in five weeks last weekend and Findley and I went to our ten year Vandy reunion. There were two minor Virginia mishaps while we were gone, but I will let mom tell you about that!:) She is pretty incredible to be able to step into the current chaos and take care of Virginia. Thanks, Mom.
I loved my college experience more than I can say. I would go back in a second.
While I miss the days when my toughest decision was what flavor of frozen yogurt to eat, I am just as happy now as I was then. Findley and I agree that our life doesn't look like what we thought it would ten years ago, but it is richer and deeper than we ever imagined. It's not easy or free of heartbreak, but no one's is.
And, last but not least,
WE MISSED YOU, TAY-TAY!!