Escape from the Ward

We were moved back upstairs to the ward on Saturday afternoon and have since been stuck in an uncomfortable limbo. Neurology seems confident that Ford's seizures have been tamed by the Phenobarbitol, Hematology is happy with the dosage of Enoxaparin, Cardiology thinks Ford is doing as well as he ever has (despite his bouts of heart-block, which have probably been happening the whole time we were at home anyway, and for which they are basically planning to do nothing), Gastroenterology wants to see him in a month in their clinic, we have already been in touch with a community based OT/PT who can follow Ford from home, his feeds have been weaned back up their previous rate, his two weeks of oral antibiotics are almost done, he's got no infections, viruses, etc, AND SO... Why are we still here?

We seem to be at the mercy of the dreaded 'charge nurse' and the junior pediatric resident, and god know's why they're suddenly in charge. As we've repeatedly experienced, right from the get-go to this very day, whenever someone new assesses Ford they panic: Oh he's really blue, he's struggling to breath, he has an erratic heart rhythm, he's not feeding well, he's so far behind in his development, ergo: this kid is really sick! Well, no kidding. But we've got the dismissive farewell blessing from 1-2-3-4 teams of specialists, who all think that he's as well as he's going to be right now, he's not being actively treated for anything, by anyone, and in the meantime we are forced to suffer through the exhausting routine of hospital living. Two weeks ago, when Ford's surgeon cheerily suggested that we take the opportunity to check into the ward for 48 hours of antibiotics and some respite I wanted to smack him. RESPITE? I'm not sure what he does for relaxation, but confining yourself to a prison-cell-sized room, voluntarily giving up all your privacy, tying your kid to his bed, forcibly restraining said kid so they can frequently stab, squeeze, prod, pinch, and irritate him, subjecting yourself to torturous nights of hourly wake-up calls on top of a fussing baby, amounts to something more like hell than a vacation in the Bahamas...

There is currently a dour clump of doctors slinking through the halls, slowly making their way to our room for Monday morning rounds. I'm really hoping I can talk some sense into them (or if nothing else impress upon them how unnecessary and agonizing this is for the 3 of us), and reclaim some control from the anxious, green med students, and policy-Nazis who've hijacked control of this ward. We just want to go home.

To end on a happier note, we've been afforded some real, high-quality respite care from the recent arrival of Grandma Corrine, who's taken to sitting with Ford in the afternoons so we can make some of the many and much needed changes to our home - to better accommodate Ford. We're really thankful for her offering to make the long drive up from California, for her relentless optimism, and for her patience and understanding when faced with our frayed nerves and wit's-end behavior. We're actually thankful for the help that all of you have given us over the last 6 months, here or there or elsewhere, or just in reading the blog from time to time and keeping us committed to updating it.