Charlotte and I made the trek to Milwaukee in time for a 10:00 a.m. appointment this morning. Despite the fact that I thought I would nod off in the car, we made it on time and in one piece.
Of course, the team was running a bit late. But, as they always tell me, their schedule is a “best guess” as they deal with in-patient and out-patient kids.
“Get to the astonishing height, already,” you’re thinking, tapping your foot. Here it is, Charlotte measured 37 inches. Yes, 3 feet 1 inch. She had lost about 100 grams, but given her growth no one was worried about it.
The concerns we took to them:
–Mealtimes have turned into mini-battles again. She screams “no eating” and runs from the table when we tell her it is mealtime.
–Her Pediasure consumption seems to have decreased back to 65-75%. (I say “seems” because I haven’t put the amounts into my spreadsheet in a while.)
–We’re seeing at least one large vomit daily.
–Feeding Charlotte four times a day is beginning to take its toll on me. I end up in tears several times a week or I yell at Charlotte. None of this, of course, is good for Charlotte.
The team’s response and strategy:
–We’re reducing Charlotte’s Pediasure intake from 800 mls. to 600 mls. per day. This will allow me to feed her only three times a day. Woo hoo!
–We need to assure that she gets an additional ten to twelve ounces of liquid daily to keep her hydrated.
–We need to get four hundred to five hundred calories of solid food in her each day.
As I have mentioned before, there is still the possibility of Charlotte and I going in-patient for what I call “feeding boot camp.” (I’m sure the Feeding Team calls it something much nicer and more clinical.) She’s been on the wait list for about six months. We’re planning now for a January or February admit depending on the progress Charlotte makes between now and then and, of course, on whether our insurance approves this plan.
In-patient So, I’m imagining a hospital-studio apartment, something a little cozy, with a one-way mirror (for me to watch the clinicians feed her and vice versa). I’m thinking a carpeted floor, playroom, etc.
Here’s the reality: A large, private hospital room with one bed. Mom or Dad get to sleep on the pullout chair (so good for my dysfunctional SI joint and insomnia). I can watch television in the room while she sleeps (yeah, right). There is wifi and a parent resource room. There is Child Life which may have a playgroup. We’re confined to the hospital for two weeks.
If we need to go, we’ll go. Philippe will come up for weekend(s) and, hopefully, we’ll get a room at the Ronald McDonald house so we can alternate who sleeps in hospital. (Or, we’ll get a hotel room.) I teach on Thursdays in the spring, so Philippe would come up on Wednesday and switch with me to the night. I’ll watch DVDs on my laptop and read the three Harry Potter books I haven’t read yet. And maybe War and Peace. Or maybe I’ll get some manuscripts ready for submission. I’ll blog. A LOT.
We’ll work it out. We always do.
Stay tuned. Maybe it will all be a moot point.