“Engaged, equipped, enabled, and empowered by LOVE” for Stanford MedX

Islide1’m a numbers gal. I’ve loved numbers forever. I loved numbers so much that when my 2 older sisters got 2 undergrad degrees in 4 years; I had to do better. I got 3 undergrad degrees in 4 years. I loved numbers so much I planned to get my masters and PhD in 4 years by the time I was 25. I defended my PhD when I was 25 and 13 months and 1 day. I even went on to get a MBA in my free time, this time focused in finance – numbers! But people will ask me; don’t you have the wrong letters behind your name to deal with all of the medical issues of your daughter? I will say, we’ll I’m just not great at Letters – just numbers.

 

slide2What do I bring as a PhD in Mechanical Engineering to being a parent of a medically complex child? And thus, what can I offer to you that is different from being another heart wrenching story.  What I can offer, is that I studied manufacturing processes, operations management, organizational behavior, design thinking, design for manufacturability, design methodology and melded that into my work in the complex world of electronic product recycling initiatives in the US, Europe and Japan.

So when all hell broke loose literally, December 15 2005, I had tools in my tool box.  I had always wanted 2 kids close in age and I managed to get spontaneous identical twin girls.  I thought ‘perfect’ that’s as close in age as they can get – keep in mind, I was career driven / motivated and didn’t want to take a lot of time off of work for maternity leave.  It was in the numbers plan and having twin girls was perfect.

Kaitlyn died at 29 weeks.  I went to the hospital; I was taken to a bigger hospital to take all efforts not to deliver Alexis at 29 weeks.  I did not deliver Kaitlyn but rather she remained in utero along with Fighter Alexis until 37 weeks.

slide3The first words about Alexis’ health on February 8 2006 were “Your daughter is going to die within the first month of her life.” Followed quickly by “And if she doesn’t die within the first month, then she’s surely going to die within the first year”

That same hospital went on to make several other mistakes

For three weeks, nurses kept trying to insert an NG tube in her right nostril, dismissed it as ‘oh well, let’s try the other side’.  They even commented how Alexis was one of the smartest NICU babies because while she was on bilirubin lights, she would lift up her head to rotate to the other side.  And then when Alexis was 3 weeks old, they determined that she had a single-sided bony choanal atresia.  They sent us home with a recipe for adding calories to my breastmilk – but the formulation was wrong – for 3 days we fed our daughter essentially chalk. She ended up dehydrated, back in the local hospital and then having a g-tube placed. After this experience, she didn’t trust us with a bottle.

She did fail the newborn hearing screen, but they felt she had a mild loss.  Instead she has a severe loss – I guess it’s just a numbers thing.

slide4And the last one, rare kidney disorder called pseudohypoaldosteronism type ii. It would end up being something that Alexis would be treated for and then outgrow, but it was the fact that 3 hospitals would misdiagnose it over 1 year.  So when Alexis was celebrating her 100th day in the hospital and her 1 year birthday at the same time, we were assigned a kidney specialist – but ultrasound didn’t show anything but yet we could leave the hospital for 3 weeks because Alexis had elevated potassium levels.  And I thought, hey wait – I have notes from her NICU and ‘step down’ days that show her bloodwork having high potassium too.  I had all of Alexis’ paperwork by then, plotted the data and spelled out in an email to the doctors on her team. Sadly they dismissed me.  But I referred to Dr Google and had the answer, so I emailed the head of the kidney department and said “My daughter has this.  Who on your staff can see us and confirm the diagnosis and start treating Alexis?”  He emailed back even though he was traveling and validated my observations and recommended a doctor on his team.

slide5Until that point, I didn’t really understand how important being Alexis’ Mom would be.  I was going to have to be her voice, her pattern recognizer, her numbers gal, I was going to have to pull on my strengths and give it my all to have her have a chance.  And by 2010, I realized that there were other people out there like me. One was ePatient Dave whose Boston Globe article was forwarded around work. I emailed him immediately and realized I was already doing several things that I didn’t realize were setting me apart from other caregivers:

– We joined the CHARGE Syndrome Foundation – even though we remain genetically undiagnosed.  Exome is clean, genome in progress.
– We documented concise details of Alexis’ EMR which doctors say are more comprehensive. Even her complex care doctor uses the 5-pg document to update the hospital record when we meet. It’s our musical score – which we keep ourselves in line and our team aware.
– We voted doctors off of Alexis’ team. We recommend doctors to friends – and we have lots of friends like Alexis and lots of doctors who don’t make the cut. We even recruited some of Alexis’ doctors to work on her younger sister’s heart defect repair.  Might as well continue to do what works!
slide6This is an example of the Medical Record:  it includes her name, birthdate, Hospital record number, phone numbers, email addresses, past and future list of appointments, quick mom-interpreted reason for Doctor to be on the team, long term care plans, and notes of what we discussed at the last appointment.  It’s 5 pages, covers 20 specialists, surgeries, outcomes, updates, school schedule, medications (=none), photo and outside providers who interact with Alexis on what schedule

It is crafted and kept in WORD: it’s simple, I can work on it offline, I can save, I can email, I can share with other parents who are moving into the area and have similar medical complexities, it’s comprehensive.  It’s low tech and sometimes in a hospital, that’s all I need.  And it includes a scan of the paper they handed me after Alexis’ heart defect repair device was placed.

slide7Alexis is non-verbal and she has a high pain threshold. This is an example of what we have used for Urgent Use or training new people who are interacting with Alexis.  Critical Medical alerts in RED, Other information of more urgent needs in YELLOW, Green = Alexis’ typical happy self.  Thankfully, we haven’t had to use this in any true emergencies.  But we have it in case it’s needed and for sure it’s going to be faster for someone to look at a non-verbal child and figure out what all of her surgeries are from a “diagram” / user guide / color by numbers chart instead of trying to rummage through her medical record that is bigger than she is.

slide8

  • From my experience, I’m on a path to ensure that Alexis’ care is not an exception. That no parent should feel:

– Inferior to a health professional because of different letters.  Different letters mean different experiences.
– Isolated because of a rare disease diagnosis
– Alarmed because of complications of their child’s medical issues
– Helpless because of the complexities in human systems
– Hopeless because of the future path outlined by clinicians
slide9Healthcare and Health IT is only important if it considers the full system.

It must be collaborative, flexible and comprehensive.

  •  – It’s got to be open to updates from patients and caregivers.

– It’s got to be flexible – Alexis and I stay in the Cardiac ICU after any routine surgery and there was no method to have an eye surgeon to discharge Alexis from an overnight in the Cardiac ICU.  I had to have her paged, come in before her clinic day started, and use paper to get Alexis discharged.

–    It’s got to be comprehensive – it can’t be silo’ed data.  Alexis’ kidney issue was life-threatening – elevated potassium is not ideal at any point. And I believe if the doctors had all of Alexis’ bloodwork in 1 place, they would have trended the data and identified the issue – and not me.  Alexis only has 1 body, so we can’t manage to have silo’ed data.

slide10Healthcare has to be participatory. It’s only the items that patients and caregivers take with them in their own toolbox that will help them make smarter wiser decisions – it’s about the knowledge that we can impart on them, given to them, empower them to participate in their care. Only then will Healthcare IT achieve the goals “to lower costs, improve efficiency and reduce error while also providing better consumer care and service”

slide13She is my futurist, caring for her is seeing into the future.  A future that:

– Consolidates silos to care for patients in their single body.
– Cares for patients where they are – home, community, hospitals.
– Communicates compassionately.
– Creates a future for Alexis’ health and well-being.
Thankfully Alexis is her own sort of numbers girl. We were told that Alexis would die before she turned one month old.  Now she’s living 91 more months into the future than what those doctors could see.

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Posted on 09/28, in Does this really happen?, Inspirational Stories, Pain Points, Reaching to Others, Stories of Hope, Uncategorized, What if Healthcare and tagged , , , . Bookmark the permalink. 4 Comments.

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