Life’s Tough… get a helmet

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Several years ago, I bought this sign from a kitschy store in the small Pennsylvania town where my children attend sleepaway camp. It was half-way through my one week stint as a pediatrician, where I treat the injuries, illnesses, and psychosomatic pains of campers and staff. I laughed out loud when I read this sign, recognizing both the absurdity and appropriateness of the motto. As a general pediatrician for the past 17 years, I preach anticipatory guidance at most office visits.  As a mother, I do my very best to comply. Car seats, helmets, protection from sharp corners, outlets, and choking hazards.  A tragic case I saw in the ICU left me with a balloon phobia, so my children only had mylar balloons (no latex helium) until their fifth birthdays.

The sign rests in the most conspicuous part of my home, on my entry bureau as a daily reminder. What exactly does it mean? I both appreciate the sign and resent it. Chronic health conditions such as diabetes, the most difficult part of my children’s existence, could not have been prevented by a helmet, or full armor for that matter. Neither could they have been prevented by my meticulous pre-natal diet with food restrictions, followed by breast-feeding. A ski helmet did not protect my mother from a traumatic brain injury, which required surgery and prolonged rehabilitation. It clearly would not have helped Sam with his multiple injuries this past summer, for which he spent several weeks in a leg and arm cast. Most recently, a helmet did not protect little Leo from breaking his wrist while skiing last month.

Metaphorically, I love displaying the sign. The importance of developing a thick skin to deal with life’s challenges should not be lost on anyone, including myself. We prevent what we can, we hope for the best, we walk outside and face the many obstacles in our path. I have tried to teach my children that diabetes should not prevent them from doing or accomplishing anything. My 14 year old son just left for an eighth grade trip to Israel for two weeks. A year ago, even six months ago, we did not think this was possible. It was too complicated: diabetes, celiac disease, multiple food allergies, growth hormone deficiency and asthma. No helmet could protect from him the myriad complications which could occur from any of these while he was away.  Thanks to technology, we armed him with as many gadgets as possible: a continuous glucose monitor, an extra insulin pump, even a new incredible device called the Dexcom SHARE, which allows us to view his blood sugars  from our iPhone as he SLEEPS while he is half way around the world. Although it only works part of the time, it is an extra cushion to prevent the near disaster of what happened on his Washington DC trip in April (see: Not just a gadget).

More importantly, he is armed with the fortitude and problem-solving ability he has developed over the past few years. That’s his real helmet. Both he and we know that problems will arise. He is sharing this amazing experience in Israel among his closest friends, We hope he won’t let his frustration and discomfort (which we have read by text already) ruin his time. “It’s hard doing everything myself, being in charge of everything. I never get to relax.” This trip will empower him and help him realize he is able to accomplish all he sets out to do. That is what he and we want.

But dammit, he better tie his shoes on those long rugged hikes, and whenever necessary, he better wear an ACTUAL helmet…


Going the Distance

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This spring marked the 10th anniversary of the opening of the Maria Fareri Children’s Hospital. It’s a place which holds special importance to me as I have been there as a physician, a parent, and (since one of my children was born there), a patient. The hospital was built in memory of Maria Fareri, a 12 year old girl from Connecticut who succumbed to rabies, suspected from bats near her Greenwich home. Although she didn’t survive, her parents appreciated the exceptional care they received at the Westchester Medical Center, but also recognized the region’s need for a more family–centered hospital. In 2004, MFCH opened its doors, the “Disney of Hospitals” where patients are treated in child-friendly neighborhoods replete with fire-trucks, trains, and teen computer rooms. Visitors can enjoy a small baseball museum, doll collection and walk-through fish tank. It is a hospital with attractive amenities staffed by excellent clinicians: yet it is a hospital, and therefore a place that you never want to need.

Each spring, families and community members gather to walk in the “Go the Distance” fundraiser on the sprawling hospital campus. The many miracle children are there as well: from extreme-premature babies to children who have survived cancer or near-fatal accidents. When my kids were younger, I walked a few times with my double stroller.  I hadn’t returned for many years until this spring, when we joined a classmate of my older son whose accidental peanut aspiration landed him in the PICU for 7 precarious weeks.

For the years we did not walk, I felt a need to separate. Perhaps it was my hectic family life, my involvement in JDRF, or the intense familiarity of it all. Though I was incredibly grateful, so much of our family time is dedicated to medical care: 24/7 diabetes management, physician visits (at least 20 annual visits to sub-specialists…) it was the last place I wanted to be.

The first time a child of mine was hospitalized was when Leo was 4 months old. It was Christmas Day, I was on call, and he had been wheezing for several days. Despite home nebulizer treatments and steroids, he deteriorated overnight, and so I brought him with me to the hospital, had him stabilized in the ER, and went to round on my patients after Adam made arrangements for my other children and arrived to relieve me. Although it was distressing, I thought it was too early in the morning to call for help from my colleagues, and I knew he would be OK once given oxygen. I was asthmatic as a child, and I had treated hundreds of babies with respiratory viruses.  Of course, it feels different when it is your own child. I found myself  asking the pulmonologist questions like “how bad is it to have less oxygen going to the brain, even if it’s only for a short time?”, knowing full well he would be fine. I suppose it was sheer adrenaline that got me through those 24 hours until my colleagues took over. It was also helpful to have good coffee and muffins from Au Bon Pain in the hospital lobby, as well as the cooperative residents who came to my son’s room to run through the patient list and update me. What wasn’t helpful? The comment of a community physician when I called to update him on his patient and mentioned my son’s admission, he replied “well, now you know what it feels like from the other side” Really??  I was angry and hurt but in time, I knew that he meant well.

The next hospitalization was when Leo was diagnosed with diabetes and went straight to the PICU (see Diabetes Diagnosis ). It was completely unexpected and life changing. It was the first time I heard this phrase: Type 1 Diabetes is no longer a death sentence, but it is a life sentence. We spent the next week stabilizing his blood sugars, learning diabetes management, and adjusting to a new normal. There was a line out the door from visitors and hospital staff including clerks, nurses, and physicians. These were people who had worked with me for a decade.  They brought enough balloons, toys and stuffed animals for a classroom of kids. We felt loved and cared for, but I knew that my relationship with the hospital had changed forever.

Twenty months later, Ben (my middle son) was hospitalized for the dreaded swine flu. What began as cough and fever quickly developed into respiratory distress before our eyes. It was terrifying. We will never forget our panic as we watched his 6 year old body struggle to breathe like a fish out of water. Grateful to be in the hands of the PICU staff, we were relieved when he was put on a ventilator, and even more relieved when he could breathe on his own. It all happened so quickly, at baseline he was my healthiest child, and he improved over the course of a few days. My husband claims he still hasn’t recovered from this hospitalization. I still shut my eyes, shake my head and shudder when I recall that image of him struggling to breathe.  It was traumatic for both of us, and yet once he turned the corner, I was confident he would be fine.

The last hospitalization of my children was for Leo when he was 3 years old. He had a simple gastroenteritis which exacerbated his diabetic condition, and it took a few days to stabilize him in the hospital. We were relatively relaxed this time, there were no surprises, and Leo charmed the house staff by showing his independence while testing his own blood sugar and discussing the upcoming Superbowl.

Although it was a rather routine admission, I left the hospital more melancholy than ever. I thought back to the countless children with gastroenteritis whom I had treated and discharged, most of whom would never be admitted again. For hospital physicians, the pressure of discharge planning begins as soon as the physician examines the patient in the emergency room. In pediatrics, the patients and families are happy that they are healthy enough to leave, anxious to put this experience behind them. We certainly felt this way after Ben had the swine flu. A boy the same age in a neighboring town did not survive the same illness, and once again, we counted our blessings. We watched Leo grow from his initial admission, bigger and stronger before our eyes, and yet at certain times he was so fragile. I couldn’t keep him in a bubble, and yet a simple childhood illness landed him in hospital for nearly a week. Having two children with diabetes and other health issues, I knew our family was more likely than others to spend time in the hospital.

Aside from emergency room visits, we have avoided hospital admissions for the past four years, and we hope to continue this trend. As we walked in “Go the Distance”, I felt grateful for a few things: It was fulfilling to support the hospital and moreover, I was happy to join my former colleagues and update them on my family since our last “visit”. Now we were also healthy and walking. Most importantly, I was able deflect the focus away from our own pervasive medical issues and genuinely celebrate with the “miracle children” who were the Walk marshals. It reminded me of why I became a pediatrician long before I was ready to start a family: I was passionate about caring for children. It is relatively easy to admire their spirit and resilience. Working with these young patients and their families—especially the sickest and most fragile—helped me in an important way. They helped prepare and encourage me to get through my own family’s medical challenges. It is to them and the lessons they taught me that I truly express my gratitude.


Who Rescued Who?

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This is my favorite bumper sticker. I am not an animal rights activist. I have never been to an animal shelter. I am allergic to most domesticated animals with the exception of a few dog breeds. Still, I would not hesitate for a moment to discuss the merits of owning a pet. As a child, I begged my parents for years to get me a dog, and they brought one home for my tenth birthday.  As it turns out, she was a relatively unfriendly schnauzer who we couldn’t keep after she bit and drew blood from a few family members. From that point on, I needed to be satisfied with loving dogs from afar.

About a month after my older son was diagnosed with diabetes at age 9, my husband Adam suggested we get a dog. He had recently been taking the kids to the pet store to play with the puppies and saw how much they enjoyed it. My son was depressed about his diabetes diagnosis. He knew how diabetes impacted our family when his younger brother was diagnosed a few years previously. He HATED the fact that he too would have to deal with wide blood sugar swings, test his BG 12-15x daily, balance insulin dosages, and carefully monitor his already restricted GF and tree –nut free diet. A dog would bring love and distraction into our lives.

At first, I objected outright. Let’s face it; I was also depressed and angry about his diagnosis. Knowing how to manage diabetes in one child doesn’t make it any easier to have two. In fact, the responsibility increases exponentially: more details to remember, more emotions and worry, and more equipment to carry. Why on earth would we want to add a dog?

Adam acted strategically.  He brought me to the puppy store, where the woman brought out a beautiful chocolate brown whoodle (wheaten terrier and poodle, both hypoallergenic). My friend also had a whoodle, and we had spent a lot of time at their house. My son had slept over a few times and so we knew he wasn’t allergic.  As soon as I held the dark furry bundle in my arms, my face broke into an ear-splitting grin, perhaps my first genuine smile in a month. My entire body relaxed. Adam took photos of me with his phone and showed them to me daily to remind me of how happy I was while holding her. We brought Pepper home a few weeks later. Sam had expressed how a dog would make him happy, Leo begged endlessly and the timing coincided with his 3rd birthday. Ben was an animal lover so there no question how he felt.

Just to clarify, I realize we didn’t “rescue” her from the pet store, though I don’t know what happens to pet store dogs that remain unsold for 4 months. The timing was important, and we needed to know the specifics about the breed of dog we were getting. This information is not always available with a dog rescue. I knew that it would be hard, and any dog owner could appreciate this. More responsibility: feeding, walking, training, cleaning. With the exception of one or two friends, everyone thought we were CRAZY, shaking their heads in disbelief when they heard.  They were concerned that we were overwhelmed (which we were) and they were trying to protect us. Our pulmonologist (whom I have known for 25 years) was surprised that “someone who takes such meticulous medical care of her family” made this impulsive decision without consulting him. In truth, I was afraid he would discourage us, and I didn’t want any more disappointment.

Why now? A friend whose dog had recently died supported our decision, “Yes, it will be hard. But a dog can bring love and happiness into a home like nothing else can.” Over the past several years, our family had been through a lot. Although we could monitor the medical conditions (diabetes, celiac, growth hormone deficiency, food allergies), we certainly didn’t expect or welcome them.  Bringing Pepper into our home was a decision we could make. It felt good to make this choice.

We celebrate Pepper’s 4th birthday this week. There is no question as to “Who Rescued Who”. Each of us loves and is loved by Pepper in our own way. She is the first one to greet me when I enter the house and tilts her head sadly when I leave, her soulful brown eyes begging me to return soon. The boys argue over whose bed she will sleep in each night. She is a perfect combination of a coach potato when we want to relax inside, and she runs and jumps with the boys to share their excitement when they play.  Happy Birthday Pepper and thank you for the love, warmth and spirit you have brought into our home.  You were one of the best decisions we have made.   We know how lucky we are to have you.


A Hero to Me

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Nobody ever said it would be easy to raise a child. The exhausting infant and toddler years, the hectic school age years, sibling rivalry, work-life balance. Enter adolescence: the stormy hormonal swings, the autonomy issues, the escalating social and academic pressures. My oldest son is now thirteen. His plate is full with health conditions including diabetes, celiac disease, asthma, food allergies; he simply lacks room for anymore. It is so easy for me to become sad and angry after he screams at all of us and retreats to the cave in his room. I know that all teenagers do this (including him) , but right now he feels awful because his blood sugar is 400 and he is leaving in less than an hour for a Bar Mitzvah party, where there will probably not be any food he can eat. He is so tired of the power bars I send with him. After his bedroom door slams and shakes the foundation of the house, I stand downstairs, wringing my hands. I like to think about the super kid that we and the outside world often see in him: the bright, witty student, the competitive soccer player, the responsible older brother. Sometimes it helps me, but these images are fleeting because there is not much I can do to change the current situation.

On his Bar Mitzvah morning a few months ago, I had the opportunity to share my thoughts about him, to publicly recognize his strengths and celebrate the young man he is becoming. Since that special day, I have read it many times, and this does help me. It allows me recapture the atmosphere of that moment, and to recognize in my heart,  that for all of the times I see his sadness and anger surface, he is much more than that. He is the person I spoke of that morning.

“Before you were born, we didn’t know if we were having a boy or girl. We did know it would be during the Hanukkah season, and so we referred to you as Maccabi, after the brave family of brothers who fought the Syrian Greeks and re-dedicated the Temple.

From a young age you have demonstrated strength and integrity.  Your determination and inner drive is impressive, relentless and at times- exasperating. But it has served you well. In school, you are engaged and inquisitive. You always enhance the classroom experience.  You bring to your relationships a unique mix of compassion and humor:  you are a devoted and caring brother and cousin, and a loyal friend.

Becoming Bar Mitzvah is a transition to Jewish adulthood and a time to accept responsibility. You have not had it so easy up until this time in your life. We know that. We know that you face challenges that people decades older than you do not face. This has impacted you, and has often interfered with your life. But you have NEVER let it stop you. You tackle everything with passion: you may crash sometimes, but you land on your feet. That drive ..YOUR INNER DRIVE  pushes you forward.

So like the Maccabis, who scored a victory although they were far outnumbered, and Joseph in your Torah portion, who faced several obstacles  but managed to achieve so much. You  are a HERO to me. You are certainly an inspiration to many of us here today.

Mazel Tov, and may you continue to go from strength to strength. We love you.”


Mid-Career Access Road

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The cover article of last week’s  New York Times magazine  “Mid-Career Time Out” (click here for article) by Judith Warner discussed the early 2000’s trend of highly educated women who left prestigious and lucrative careers in order to raise their families. Ten years later, the author discusses the challenges many of these women have faced: difficulty in work re-entry, stress on marital relationships from shifting balance of power and expectations, raising a family on a single, often reduced income due to the recession, and a change of identity and self-worth.

The article interested me because I was a full-time working mother who wanted to work less, especially after the birth my second child. Unable to reduce my hours because that would mean forfeiting our health insurance, I remained a “full-time conflicted working mother.”

My love for children had influenced my decision to become a pediatrician, and I was spending more time with my patients than with my own kids. Due to my hours, I was rarely there for pick-up or drop-off during Sam’s first year of pre-school. He was the youngest student in the school’s history to take a bus to school and back home to our babysitter. Knowing that thousands of women shared my experience  didn’t make it any less painful for me. I was sad that I was missing so much of this magical time in their lives. We made a family decision that after my third child, we would bite the bullet and I cut my work week to 3 days.

Nine months into this improved schedule (which made a huge difference in my quality of life), we found ourselves in the pediatric ICU with Leo in diabetic ketoacidosis. Type 1 Diabetes in an infant requires a degree of hypervigilance that is emotionally and physically exhausting.  Oct 1 2007 was my last day of work until I returned a few months ago. Relating it to the above mentioned article, I would call my experience a “Mid-Career Access Road” replete with potholes, construction zones, and broken traffic lights. For a while, it seemed liked more of an off-ramp, and I did not know when or if I could return to work.

Here is a list of experiences on the Access Road:

1.  Endocrinology sabbatical (still doing it)

2.  Gluten-free shopper and baker (still doing it)

3.  School lunch lady volunteer (cleaning tables and buttering sandwiches which my kids can’t eat-but I got to see them socialize during lunch)

4. Soccer mom

5. Elementary school art appreciation/history teacher (a program run by parent volunteers –don’t              worry-we had training sessions to make up for my lack of art history knowledge)

6. Fundraiser (not too shabby, our family’s team has raised over $150,000 for JDRF)

7. Lab courier (my least glamorous role, I brought a stool sample of my friend’s child to the hospital lab because it was time-sensitive and didn’t need to miss work)

8. Lobbyist (see MDmommy goes to Washington http://mdmommy.com/?p=447)

9. Class mom

10. Board Member (for JDRF and my children’s camp)

11. Mommy blogger

The silver lining is that I was able to be more present in my children’s lives than I initially thought I would. I am grateful for this. Make no mistake about it, I would have given up all these experiences in a heartbeat if it meant my children wouldn’t have to live with their health conditions. I have learned over time that we lack control over when and which challenges confront us. We do control how we react and what we do when they occur.

Not all women have control over their decision to opt-out of the work force. Certainly, no one can foresee all the sequelae of their decisions.

I am merging from the access road back onto the highway. Although the roadwork has followed me, I have become a better navigator. For all the times I may have asked “WHY” or said “ENOUGH”, the obstacle-ridden access road has prepared me for re-entry into my pediatric career.


Work is Good

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I just completed my first month of work at Pediatric Associates of Southern Westchester and… work is good!

What surprised me was how quickly I started to enjoy working. I was fully aware of some of challenges: the paperless, computerized system (new to me), navigating a busy new office with different protocols and personalities, and brushing up on new vaccine schedules and antibiotic dosing. The biggest challenge is mental expenditure. After all, work is work! Everyone knows that work requires not only a commitment of time, but a commitment of mental energy and emotion. Given the breadth of my own family’s medical needs, it had been a long time before I could even think about adding work to my plate.

So, how does it feel to be back taking care of other children, other families? I love it. I remember how much I truly love working with children!  It feels great to answer questions and to put my education to the use for which it was intended.  Over the past five years questions ranged from, “Mom, where are my socks? … how many carbs and are you SURE its gluten-free…?to … should we start the steroids for his asthma, or will it make his blood sugars too high?”   My pediatric expertise helped a little, mostly when the diabetes was complicated by other medical issues. Diagnosing and treating patients who have issues beyond the scope of my children’s issues is, for lack of a better term, refreshing. I am helping them, even as I walk them out of the exam room.   I do not need to take their medical problems home with me. Being one step removed from the medical issues of my patients is an important distinction from the past several years at home with my family.

How is my own family doing? So far, they have been good. The school nurses call or text about Leo’s blood sugars, and my patients don’t seem to mind the very brief interruption. The days are busy, sometimes head-spinning and often no bathroom breaks for several hours. I completely lose track of time. I am happy my own children have the structure of school to check and report blood sugars. The unstructured time will be more difficult, I am sure.

And the juggling act of every working mother?  Shopping at four different stores to accommodate the dietary restrictions is challenging, and making the kids their favorite foods “re-heated, not fresh” isn’t perfect. Leo asks me daily about my work schedule (which is about 23 hours/week) and Ben sometimes waits for me to come home to start studying.  It is very heart-warming to hear the pitter-patter of feet and feel the warm hugs when I walk in the door. Those moments might be one of the best parts of going back to work.  Then, of course,  I start hearing … I’m hungry …What can I eat?  Part of me wants to run back to my car. But, that too, is a “joy” of motherhood…

 


‘Tis the Season…

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‘Tis the Season…for Colds and Flu

7am:   Sam, my 12 year old wakes up not feeling well this morning and doesn’t want to go to school. He generally enjoys school and he looked fine, but his blood sugars had been high overnight.  This sometimes this indicates the onset of a cold. With diabetes it’s hard to separate all the factors. Sometimes, after a night of consistently high blood sugars, he wakes up more cranky than usual.  We are able to give insulin through the pump during the night to bring the blood sugar down without waking him, which, of course we did. The body doesn’t feel well when so much sugar is coursing through its veins. Is that why he woke up sluggish and cranky?  But, then again, he’s a pre-adolescent boy with a math test today. However, I must bear in mind the other diabetic in our household: When our 6 year old son wakes up from a “high” night, he, too, tends to be extra cranky.

Kids get on the average of 8- 10 colds per year and they are more frequent during the winter season. I didn’t need my MD and specialty in Pediatrics to tell me this.  But it’s so much harder when they have other medical issues. With diabetes, anything that sets the body slightly out of whack can affect their blood sugars. This includes growth spurts, viral infections, weather changes, altitude and medications. When my kids get sick, this triggers their asthma which requires them to take more medications so they can breathe well and not get sicker. Also, when the blood sugars are high, it is harder for the body to fight infection. This is because the white blood cells (neutrophils) work more slowly. It is a vicious cycle. It is easier for them to get sick and it is harder and takes longer for them to get better.  They feel worse when they are sick because abnormal blood sugars make you feel like CRAP. So that adds more crap on top of your general sick crappiness.  It is also hard to predict into what a cold will blossom. One summer his cold at sleepaway camp triggered a full-blown asthma attack which required steroids. His blood sugars were so unstable he went to the ER and stayed home for a week. Thankfully, this is not always the case, but there is the tension of never knowing which way the wind will blow. We can only hope for the best.

7:45 Sam needs to either get out of bed and get dressed for school or stay home for the day.  I am hoping for school. He has no fever or worrisome cold signs, perhaps just a little wheezy. He gets out of bed, takes his insulin, inhalers and breakfast and goes to school.

8:45 Sam calls from school to tell me his BG was 354, so he felt high, but he also felt low because the albuterol  for asthma makes him feel jittery and low. I tell him to retest and call in 20 minutes.. He does with this report:  his blood sugar is even higher and he is starting to cough. No doubt now: Time to go pick him up.

While Sam leaves the room to pack his bag, I am grateful the school nurse hears me out over the phone. “I feel bad for him…it sucks for him to feel like this and I can’t do anything to make him feel better.”  She replies, “But I see him every day and he has become so strong, so robust as a person. I see others who suffer more for far less things. Sam is doing fine.”

Her kind words reassure me. Of course, isn’t that what we all want to hear? That our children are able to confront their challenges and master their environments?  I’m certainly thankful that he is able to show these strong character traits to the outside world.  It makes me proud and it makes me smile. But, my smile is temporary. Reality hits as I approach school and I wonder how bad this cold will be? How will it affect his BGs over the next week? And, finally: how long until we return to a level of “normalcy?”