We got to our room last night a bit before 9 pm, and after Becca was poked and prodded and had an n-g tube shoved down her throat, she fell asleep around 10. Thank goodness the nurses decided to ignore the orders to check vitals every 4 hours so that she could sleep! (Seriously, she's not here because she's sick - why wake a sleeping toddler who is here to grow every 4 hours by taking her blood pressure?) She woke up at 6, so she got 8 of her normal 12 hours of sleep. Not too bad by hospital standards. They gave her 12 ounces of her formula (Boost Kid Essentials 1.5, packing a whopping 45 calories per ounce, same thing she gets in her sippy cup) through her n-g tube over 10 hours. When she woke up and I realized that she had already gotten 80% of the calories she needed today, I felt like a new woman. Giving her breakfast was actually enjoyable (even though she ate 4 cheerios and 1 grape).
This morning, we saw the resident on GI duty and the GI fellow. Actually we saw each of them twice. We never did see the attending (!) or the endocrinologist that we were hoping to consult.
We stayed busy throughout the morning. We (and by "we," I mean Becca and I, as John was at home waiting for the interwebs guy) saw a child life specialist (perhaps the coolest job in the hospital), who brought us a playmat (not like we can keep this kid off the dirty floor, but at least we can cover part of it and make it more comfy for mom and dad to sit on) and some fresh toys, including a plastic Fisher Price armchair, which is adorable and the perfect size for Becca. We may have to use some birthday money to get one for home. I particularly love that it has a book attached to the side table. But I digress. We also talked to the social worker, who gave me some numbers to call to investigate ways for me to go back to work without causing us to lose our TennCare (again). Then Becca received a short occupational therapy evaluation. The OT suggested that we still keep the (rescheduled - was set for tomorrow) outpatient evaluation so that they could do more thorough assessments of her, but she is recommending that she get OT 3 times a week while we are here. (That's way more than we normally get, but, remember, we're in feeding boot camp, so I guess they want to hit the sensory issues hard while we're here. I'm all for it!) We also managed to see the speech/language pathologist (aka feeding therapist) at lunchtime, which was great! She is actually making calls/sending e-mails to get us fast-tracked into group therapy instead of sitting on the waiting list with 41 other kids. I guess having the GI admit you and threaten you with a feeding tube moves you up the list a bit. Of course, Becca totally made a liar out of me by...drumroll....Karla, Caroline, and Roxanna, this is for you....eating 5 bites of applesauce off a spoon! Wow!
After lunch, Daddy arrived, which was very exciting for both Becca and me. Once we got Becca to sleep, we got to spend some time with two of my most favorite people in the world, Carol and Pam. Becca woke up while Pam was here, so she even got to play with her some. Pam being the rock star that she is, she even helped entertain/comfort/distract Becca while they shoved the tube back down her nose into her stomach.
Oh yeah, I forgot about that one. Mid-morning, Becca was sitting on my lap, eating some pretzels, when she, as usual, gagged, coughed, settled down again, and then puked. Good times. I even had to go back and revise her food journal because I could identify pieces of breakfast that I didn't notice her actually eating. Yum. The amazing part? The nurse cleaned it up! Whoa! I didn't have to clean up the vomit! We may never leave this place.
But back to the afternoon, which I am apparently not recounting in chronological order, because before Pam arrived, I took a nice nap (though nowhere near Becca's 3 hour slumber) while John watched World Cup games on the computer (okay, he probably worked on his sermon some, too, but I only saw the soccer games) and talked to the visitors I missed, including the nutritionist and our buddy Melissa. Oh, and I also ran into a friend in the Taco Bell/Pizza Hut line (love healthy hospital food!) who happens to work in the sedation/surgery/etc office and offered to act as our mole. She later gave us the down-low on tomorrow's plan (since, you know, we never saw the attending, though he apparently stopped by, didn't see us, and didn't bother to ask the nurse where he might find us even though we were just a few yards away eating lunch - ugh).
So here it is:
She's getting tube feeds from 10 pm - 4 am, though now that I think about it, I don't know how much they are giving her. At 4 am, they will switch to IV fluids, which she will get up until her procedures begin at 1 (per my mole) or 2 (per the resident, via the nurse). She will be NPO (nothing by mouth) from 4 am on. At some point they will give her an enema and/or a suppository. Yay! Sounds like a fun morning for both of us! They will put her under general anesthesia and perform an upper and lower endoscopy. They are looking for...umm...irritation, tears, and inflammation, I think, and will take teeny tiny biopsies. Both with their pictures and the biopsies, they will look for things like food allergies, including celiac disease. After the scopes are done, they will run another tube down her other nostril and place a pH probe in her esophagus. Over the next 24 hours, the probe will measure the pH levels, checking for stomach acid shooting back up.
My hope is that the tests will show clear results (as in, obvious ones - I'll be kind of pissed if we've come this far in dealing with obvious reflux and they don't show ANYTHING wrong) and that she doesn't wake up from the anesthesia completely hysteric. Last time she had to be put under, the recovery nurse very emphatically suggested that we take her out of the unit when she got so loud and inconsolable that other parents were coming and checking her out. Seems that itty bitty has an awful lot of her cousin Emma in her, reflux and anesthesia hysteria included...but she's also just as smart, strong, and sassy, so I'm all for the resemblance. :)
I think that's all. Oh! We also had another visitor, via child life: Ozzie, the mascot for the Nashville Sounds (our minor league team). Becca LOVED him. She couldn't care less about the pitcher, but she followed Ozzie down the hall, knee-walking and squealing all the way. Pretty cute.
And now, I'm going to attempt to very quietly watch some Mr. Monk before I sleep. Thanks for all your kind thoughts, words, visits, etc. It's really weird to be back here -- on the same floor as the NICU and in the same unit, kinda-sorta, even -- but it's also really...comforting? Or at least it feels like we might get to the bottom of some of this stuff. Or work out some of the other stuff. I mean, we've been here 1 day and look at all the departments that have looked at her. We're getting somewhere!