Many who know my family have followed the journey of my daughter’s sudden, inexplicable illness, and her road to recovery. A ‘sore tummy’ turned into two emergency department visits in 10 hours, a five day hospital stay, in-patient and then out-patient testing. More questions than answers. More doors to open than close behind us. Five days of constant, never-ending pain, five days of morphine drips and anti-nausea meds (to tolerate the morphine); food replaced by IV fluids.
Three days with sheets unchanged and no sponge baths or washcloths to ease her discomfort – three days with the same johnny. No little pile of towels placed precariously on a chair or table. I was so distracted by talking to one specialist after the other – they all started to look like each other with big question marks on their faces as they came into the room. There were the crisp white-coated fellows from Beth Israel or Brigham, I can’t remember now. They were eager to show us they had washed ‘their’ hands – they held them up and rubbed them in front of us, like surgeons waiting to dive into their task. Their white coats were tailored and went all the way down to their knees – designer, no doubt. These young people were beautiful – so nicely dressed, so clean and crisp, pretty jewelry, precisely coiffed, nice shoes.
For four nights I slept on a geri chair – the newest thing, they said. Designed for those family members who wished to spend the night at bedside. Orange plastic with breaks in two places – one at your waist and one at your knees. When you stretched out – trying desperately with your weight to make the chair click open like a rickety barcalounger, and stay flat so you could stretch out, it would only do so until you shifted, then the weight would push the parts together, and the chair would begin to catapult forward. A torture chamber, better replaced by a big ol’ easy chair – they should demand their money back – I’d write testimony to help with that.
On day 3, I looked up and said, “who changed your sheets?” “What do you mean?” my daughter replied. Mom went into action and sheets were changed, but still no new johnny or face cloth, or warm soapy water – no toothbrush and little toothpaste in the kidney shaped plastic dish. Was she that sick, I thought?
On day 3, we learned about an emergency code the patient could call on the phone – a kind nurse suggested it. And yes, late at night, a team arrived – an administrative team. My daughter, who is skilled in conflict resolution, ran the ‘code’ herself. She explained what had happened and how we knew no answers, how her sheets hadn’t been changed, and for her first foray into solid food she was brought pasta with red sauce. “What were you thinking?” At five a.m. one morning, a phlebotomist came into the room, a dashing young man, flipped on the overhead light, went between the geri chair and the bed, flipped on the bed light, grabbed her arm and put the tourniquet on as he shouted, “good morning! I have to take your blood!” and she yelled, “go away, what are you doing – who does that to someone when they are dead asleep and sick? What are you thinking?” (That moment was my first ray of hope she was getting better.) And how the nurses – some of them – would lie – would tell her they were going to get the doctor, and not do that. Would tell her that the big team was coming in from Beth Israel or Brigham, and they never did. Five days. And she was waiting. Maybe the ‘experts’ would have answers. But they never came. The emergency code team took their notes. We wondered if some famous star had sued the hospital and this team was part of their settlement to the patients left behind. To this day we don’t know what happened after that late night bedside meeting – because no one ever told us.
Eventually, the situation improved. She took her first steps down the hall. Straight from her bed, without having even sat in a chair yet. “Oh, oh..”, I thought. And, yes, lickity-split, she was being prepared to go home. No answers. Lots of medication. IVs being pulled out.
Recovery took some time. Just walking in the door and seeing her cat made a world of difference. Couch all made up with sheets and pillows. Mom by her side – where else would I have been? And time did its miracle.
Tests followed – one by one – answers, we needed answers. Almost none were to be found. “Don’t look further (in literally a hushed whisper) we don’t do that today, in our ‘new’ medicine – we just treat symptoms and if they go away, wonderful. We don’t look for more.” Really. Almost by accident we find some fixable vitamin deficiency and it gives us something to work on, a crack in a door, and we go down that path. And still do… We have no diagnosis. Just questions. Just a somewhat uneasy feeling and a “what the heck was that all about?” nagging, nagging question.
As 2013 comes to a close, I have four days left to pay the bills that have accumulated – to get the medical tax deduction for this year. I might as well. I have been collecting bills, notes, forms, tests, hospital ID bracelets, etc. in this folder that is so thick it no longer closes. Tonight I open everything, decide to sort it, which bill to pay, which one to dispute (two ED visits in 10 hours? – don’t charge me for both when she should never have been sent home…please…thank you…), and then – the big question – how much has been covered by insurance? I take a photo. Each pile is a different ‘vendor’, if you will. We were in one place, but I’m counting 10 separate places to be paid.
My daughter is very smart. She is a grad student at a Massachusetts university – one with a unionized faculty. One that offered her a position assisting a professor (and by the way, that makes you a union employee, and by the way, you also get health insurance, and there is no charge to you for it).
Our bills will total $50,000 gross. Or more. The door is still open. Massachusetts was the first state to have Romneycare. I will be doing final calculations, but it looks like we will have less than $2,000 to absorb. Maybe $1,000 if we can negotiate based on being an adult student with little income/assets.
I am grateful. If this were part of the health insurance plan I paid $1,500 a month for previously, in RI, I would have been looking at a bill of $6,000, $10,000 or more. For a five day stay. Two CT scans? $2,500 each. Really.
Tonight, as I write this, the Christmas lights fill my living room. The house is quiet. I have poured myself a glass of wine. Red wine. It’s healthy, isn’t it? My daughter is going out with friends to celebrate Christmas. And yes, I’ve asked her if she’s taking her prescription vitamin and when is her next injection….and blood work….and the path is open before us. But finally, at this odd interlude between Christmas and New Year’s, I’ve had time to think – and ponder the thousands of stories far, far worse than ours – the stories of extended hospital stays, and cancer treatment, and open heart surgeries, and extensive rehab stays. And I smile. It seems like an odd reaction. But Obamacare will save lives. Indeed it will. It will also do more than that. It will open access sooner. It will force payers to force payees to lower costs. It will empower patients as never before. It will not be perfect. It will moan and groan and cry and quake as it births itself to a whole new future for us – “we, the people” of this great American nation.
“Yes…to our health!”
(that’s Mom’s glass of wine)