Showing posts with label transitioning healthcare. Show all posts

"Are you here all by yourself?" Her kind smile let me know that she was somebody's grandmother. Her tired eyes told me she was some young patient's grandmother.

I nodded yes, and gestured at the empty seat at the round table I was at, letting her know she could sit there. My attention turned back to whatever it was I was doing on my laptop, something that wasn't really busy enough. She plugged in her cellphone in the outlet on the colorful blue pillar near us. I figured she was just waiting for her grandchild's appointment to be over, maybe she was waiting for the Valet to bring the car around, her phone made trilling alerts. I continued tapping away, letting the familiar noises and framed Dr. Seuss pictures fade to the background in my mind. The old woman became a part of that background in my mind too.

"My granddaughter just got out of surgery. She had surgery on her back, I just came down to sit for awhile. To get away from her room, it's just so hard to see her in so much pain." I looked up from my screen as she spoke. Her elbows rested on her knees as a maroon cellphone, the kind of model where a keyboard slides out, shook in her hands. I closed the lid of my laptop and listened.
"I'm sorry to hear that. But I can understand it can be exhausting sometimes, all of this. It's good for you to take a break every now and again." She set her cellphone down on the table as she slid fingers in the space between bifocals and her eyes, she rubbed them like she was trying to see past an illusion.
"My son is in there with her right now. And he keeps sending me these texts letting me know how she is doing, the pain that she is in. No one calls anymore, everyone just texts and I hate texting." She smiled at me, knowingly because she knows that I probably hate talking on the phone and prefer texting. But I listened because it seemed that is what her she needed most.

"My granddaughter she is 17 but, mentally she is really probably about 14 or so. She had surgery on her back because she has ..sholi..sholio..something? Her back has a terrible curve in it. I am not even sure how it's pronounced."
"Oh scoliosis?" I respond. She nodded eagerly, and I took that as an opening. An opening that maybe I could venture in, although in truth I had no idea what I was getting myself into. Or, more importantly - what she was following me into.
"I have a brittle bones condition, so my bones break easily. I was basically born with scoliosis. I'm a little familiar with the back surgery because some of my friends have had it, they put a lot of hardware in there. My friends all seem to be happy with their operation."
"Oh bless your heart. I know this was probably the right decision for her but it's still hard to see her in all of that pain." I could only nod. Au Bon Pain smelled like it was baking another batch of buttery croissants behind us. A child screamed for a balloon. I saw the tip of a red shoe from the hospital clown from the corner of my eye. Her tired sighs, interrupted by the trilling noise of text message alerts, were loudest to me.

"Have you been going to Children's Hospital for a long time?" She asked me.
"Yes, I was diagnosed here. Although today was my last appointment with my pediatrician, I'll be headed to a less colorful and fun doctor's office next time." I said, trying earnestly to kid.
"Oh my! That's quite some time! My granddaughter, this is the second time she has been here. She was originally at the Children's Hospital in Florida."
"Well, you know they do say that Boston is the best place to be for children's medical care." My loyalty to the hospital, despite all of its changing construction and branding, was something I was proud about. A pride that I wanted her to find some comfort in.
"I know, I know. And I am sure the surgeon did a fine job on her. He really seemed to know his stuff, he seemed like he knew what he was doing."

Conscious of all the reassurances she had probably already been receiving, whether it was the ICU Nurse, the attending, the surgeon, the on-call staff, the pain management team..I didn't want to repeat the same words I myself have heard so many times before. It occurred to me that perhaps this somebody's grandmother wanted to be listened to by a patient. Someone who had experienced the care her granddaughter might not be capable of communicating right then.
"I've always felt safe and like my doctor would do a good job when I'm with them. At the very least, I have always gone home feeling better."
"Thank you. Thank you, that's kind of you to tell me. Well, I should probably be heading back up there again. Now you take care of yourself okay? Stop breaking so many bones!" She smiled at me as she reached over to unplug her cellphone charger and began wrapping the cord around the charger.
"I'll do my best. I hope your granddaughter has a quick recovery, I'll be thinking of you today."
"Bless your heart again dear, you have a wonderful day."

Admittedly I had ended my last appointment with my pediatrician feeling underwhelmed about where I was headed for primary care. Probably a hospital that was much less colorful, something less exciting and energetic, certainly nowhere that had cartoons playing on the t.v. in the waiting room! But as I thought about how my physician was telling me about "more adult care.." I realized that even if I don't feel totally enthused by the prospects, there are clearly those around me who see that I'm ready to move along: on to the care I will be receiving, and the kind I know I can give in return.

I'm at that weird age where I really shouldn't be going to a Children's Hospital anymore, but since I've been there since birth -- and know pretty much everyone, even the Big Apple Circus Clowns (on a first name basis..) I still go. They know me and I know them. This isn't just a matter of comfort and familiarity, it's a matter of logistical ease. As I'm sure many of you know, explaining what O.I. is and knowing precisely "this is what has worked for me in the past.." and "this is what has not worked for me in the past..." matters a lot! 

It matters not only in the sense of saving time on those hour long healthcare visits, but it also matters in the sense of how much pain will I be in, or how high will my blood pressure be after I finish giving Dr. So-and-So a piece of my mind.
When I was little I remember my parents having to go to a specialist for nearly every part of my body. While my brothers could just receive a clean bill of health from their pediatrician for the start of the school year, I would have to make the rounds to each floor of the hospital. At the ages of five and six I thought it was fun to pronounce words like: "audiology" "ophthalmology" and "radiology" -- they were like Dr. Seuss rhymes to me. (More evidence that I am a very deranged person perhaps..) My mom would somehow finagle my appointments so that they would all fit into one day, a cooler would be packed with snacks and sandwiches, my backpack would be stuffed with summer reading books, I usually brought along my favorite toy (the etch-a-sketch) - and it would be a picnic at the hospital.
Maybe it is because I am slightly weird but I really did enjoy hanging out at Boston Children's Hospital. Every possible surface is covered in a swath of bright child-friendly colors; the patient entertainment center has arcade games to play for free; hospital clowns roam the halls (and seemed to follow me wherever I go..); the t.v. in the waiting room was always tuned into Clifford or Wishbone; there were endless pages to color, and elderly volunteers passing out stickers in the hallways; in most of the waiting rooms there are bookshelves lined with books that patients can take home. Honestly? If you take away the needles, the white coats and scrubs -- Boston Children's Hospital is like a glorified day care center. It is fun! (Please note the use of present tense in that last statement).

In other words, in terms of my health care I have been ridiculously spoiled. I once went to an appointment with my younger brother and was shocked by how silent his doctor's office was. In comparison, his doctor's office seemed frighteningly stiff and serious; I decided at that point that I never wanted to stop being a patient at Children's Hospital.

I am no expert in healthcare options but I assume that because O.I. is generally diagnosed at birth, or during childhood years - it is therefore considered a pediatric condition. This makes sense for why many of the specialists that I see are at Children's Hospital -- they know what it is (usually), and know how to treat it. But medicine is changing, there are now many adults who have O.I., those patients who were once diagnosed with the pediatric brittle bone condition are now grown-up adults...myself included.

My orthopedic doctor has been my go-to guy ever since birth. Among my family we have tried many times to play the "guess how old Dr. Shapiro is?" game and we are never certain, and he's not the type of guy to give away his age. The general consensus is that he's old, probably around his 60's at this point - and maybe even close to retirement age? *Gasp* I dread that day when he tells me he is going to retire.

Who will I go to? Will I have to explain how exactly to hold my broken leg? Will I have to explain just the right combination of pain medications to prescribe? Am I going to have to tell someone totally new about why I hate wearing slings? Will this new doctor have a new attitude towards surgeries and operations that I don't agree with? Will Dr. Shapiro's replacement be as willing to write the kinds of medical-need notes that I request? Is he going to be as flexible about allowing me to call his pager directly? There is so much that I dread when the moment comes. I hope it doesn't happen for a very, very, very, very long time. Dr. Shapiro is like my second dad, I wouldn't know what to do if he suddenly decides he wants to retire to a life of watching hockey, and return to Montreal.

But of course I won't deny the fact that there are some parts of me that do require adult health care; and a few of my physicians at Children's Hospital have been kind enough to nudge me in that direction "Sandy, you know, you're not a child anymore -- although of course we would be happy to continue to see you, and we are not trying to push you out of the system.." I appreciate their kind nudging into the more boring adult hospitals. I will miss the sounds, the noise, the colors, and yes - even the clowns. But I am slow-creeping upon a dreaded realization that a part of being an adult also means knowing what is right for you, and accessing what is right for you. Taking the initiative to say "okay, I am no longer a child and want to be treated as such.." means much more than being disgusted when we are spoken to in a condescending manner. It means more than getting upset when I am asked "where is your mother?" It means recognizing for myself what it means to be an adult inside and out.

So what I mean to say is.... I'll get there eventually. Sooner rather than later.