Exhausted beyond belief.

I discovered today how a person can fall asleep while driving. I seriously did not think I'd make it the drive home from UNC, and had it been just me and I was on a road trip I would have pulled over for nap. I had to blast the AC as high as it could go and shift in my seat every few minutes.

Andy doesn't come home until the 31st and I'm barely hanging on as it is!

Since he left things have been non-stop. That Thursday our nurse went home sick. Friday we had to go the pediatrician for tracheitis, followed by a trip to the lab. Saturday and Sunday I didn't have a day nurse. Monday another trip to the pedi. Tuesday a massive list of errands that took me 5hrs to complete (ridiculous!). Today our first trip to UNC. Thankfully our pre-op appointment was cancelled so we managed to make it home at 2-ish. Tomorrow I have to clean and restock the daiper bag and go back... and Friday we're back out at UNC.

I'm a walking zombie.

To single parents of special needs kids... my heart goes out to you! I feel exhausted after just a week (albeit one hell of a week schedule wise).

Things went well today, though. Mackenzie isn't aspirating when she's drinking from her sippy, but she is aspirating when she refluxes (evident by her current tracheitis)... and it turns out Mackenzie has wickedly awful reflux (which we kind of already knew, just wasn't entirely sure just HOW bad it really is), which is why she's not wanting to really eat by mouth and why she limits her oral intake. So the nutritionist is rearranging her feedings by increasing the calories and decreasing the volume. Then we're trying to get on with a GI specialist in Raleigh to figure out the meds... Mackenzie definitely needs more reflux meds, but it'll be the GIs call on what.

Phase 1 in feeding adjustments is to try 22cal, and run the smaller volume over a longer time (3 ounces over an hour during the day, and then her continuous nightly feed is a little over 1 ounce an hour). On Friday, if we haven't seen an improvement then we'll try 24 calorie. If that doesn't work, we can go up to 27 and yada yada. I have a special way to mix her formula (yes, I'm mixing ready-made formula) since it's only a 20cal formula. If the 24cal concoction doesn't work then we'll have to switch formulas... which is what I think is going to happen.

I'm not thrilled about having to micromanage Mackenzie's diet, but I'm super glad we have a nutritionist who is handling things. I'm all for bringing in specialists.