Boston Children’s Hospital Innovation Summit Rising Star

Yesterday and today, I’m atBCH-RisingStartending Boston Children’s Hospital Innovation Summit. So far, it’s been a fantastic mix of presenters with inspiring stories both from inside of healthcare and outside of healthcare. As a ‘NC girl’, I enjoyed especially the ‘what can surgeons learn from NASCAR’ talk by Dr Waters. It’s been all around fun, a lot of energy, passion and will to do awesome work for kids and families.

Why am I writing about this? I am receiving an incredible award. I’m humbled, I’m still stunned. You know of my journey – how I merged Alexis’ experiences into my work (see more: http://bit.ly/1e1qKoe and http://bit.ly/1toBeYL). I will be receiving the ‘Rising Star’ Award.

A Brief description about Rising Star Award:

  • Nominees shall have accomplished an outstanding achievement in healthcare of unusual merit and independence of thought and originality that significantly impacts pediatric care, defined as care provided to patients under the age of 21.

I enjoy challenging myself to adhere to my planned remarks by posting them online. It’s a commitment to you that I won’t deviate wildly off script. 🙂

At this time 9 year ago, I was pregnant with twins and I’d never been a children’s hospital.
Since then,

  • Kaitlyn, Alexis’ twin sister, died at 29weeks pregnant.
  • Alexis spent 2 ½ months in the NICU after being born at 37 weeks.
  • Alexis had 8 surgeries and we patented a device for Alexis to avoid having a trach, using CPAP at each night since she was 1.
  • Alexis’ little sister was born and had open heart surgery
  • Launch LightAide, a product inspired by the way Alexis sees the world.

At first, it was just a passion to make sure everything with Alexis’ medical care went well and sharing with families how we did that. Then, when she needed CPAP – figuring out a way that we could safely and smoothly adhere her CPAP without issues. Then, when she and her peers were having difficulty interacting with normal lights – identifying technology inside of Philips that could be helpful to them.
Having my kids has ignited a passion – combining my engineering, business and ‘mom-invention’ skills.
I can’t stop until every child that needs technology has it, available for them – if it’s LightAide, a CPAP, or room lighting to help heal and calm patients and their families – to give them a sense of normal. When Alexis visited Philips Lighting showroom in August 2010, her face lit up. Even people who were meeting Alexis for the first time – could see the transformation. She was seeing the walls for the first time, lit up in LED technology.

  • Wouldn’t you love to see a child’s face light up when he can make out the brightly colored lights?
  • Wouldn’t you be thrilled to see a child figure out cause and effect for the first time?
  • Wouldn’t you be amazed to see a child play with their sibling?

You can make a difference, by supporting technological advancements, putting LightAide into your hospital and changing the lives of children.
I hope you can understand how desperately parents and caregivers want to help improve healthcare. Please – let us. We’re not physicians or medical researchers, but we know our hearts, we know how important your work is, and we know how important it is to find every single way to improve care in the hospital and at home.
You can make a difference, by supporting parents and caregivers on their journey to improve healthcare. I don’t know where the next ‘Catherine Rose’ is – but she’s not far away. She’s juggling her roles and seeing the world through a different lens.
I recently turned 40, giving me a chance to pause and consider my journey. The health of my children means the world to me and they both inspire me everyday. My journey is just one of many caregivers around the world, working hard to do more.
I want to thank you for this award – it appreciates where my journey has taken me over the past 9 years – I’m eager to push for what I can accomplish over the next 40 years.

Posted in Inspirational Stories, Reaching to Others, Stories of Hope | Leave a comment

Good Reads

I am not as “present” in this Blog currently because of extended school vacation week (Alexis was planned to be out, but she is a good productivity assistant, Jessica was unplanned out because of the Blizzard – and she likes to control the agenda for the day).

Alas, I have been reading other people’s posts (some recent, some just new to me). Hopefully you will enjoy the quilt of things that I have found relevant and interesting:

  • Short read about how to be a friend to a special needs mom, even if you’re not walking the same path: http://beautifulinhistime.com/2013/06/10/how-to-encourage-a-special-needs-mom/
  • Some readers, who are appalled at my spelling or creative grammar, may hope that I take more of the recommendations to heart: http://www.jdroth.com/become-writer/
  • First 30+ years of my life, people might have characterized me as a control freak (maybe akind to what Seth Godin calls “accuracy minded”), but Alexis has taught me a whole lot about resiliency. I had a great working title of a book started last Winter/Spring, hopefully I can resurrect it and carve out time to create it in 2014. Great observations in Seth Godin’s blog about accuracy, resilience and denial: http://sethgodin.typepad.com/seths_blog/2014/01/accuracy-resilience-and-denial.html
  • Heart-touching and real from Regina Holliday, need I say more? http://reginaholliday.blogspot.com/2013/12/the-christmas-tree-of-1987.html Reminds me that people encounter real physical and emotional challenges each and every day. Everything I can do to help improve that will make the world a better place.
  • Dr Leana Wen has written a great book (check it out), but her recent blog post applies to all people who are caring for anyone diagnosed with cancer: http://whendoctorsdontlisten.blogspot.com/2013/12/what-to-do-when-your-mother-is.html
  • Pat Mastors writes about the term Patient Advocates and how we seek to make ourselves obsolete, http://islandsofexcellence.blogspot.com/2014/01/the-gift-of-patient-advocates.html Powerful thoughts.

I’m sure this isn’t the end of great reading for 2014, but I felt like some of these were worth kicking off 2014. Maybe something that I’ll write in 2014 will be “worthy” of including here sometime🙂

Posted in Good Reads | Leave a comment

The Circles For My Child’s Survival

Warning: This is an outrage post. For my normal readers, I’m sorry that you will see such a raw side to healthcare management. For those who manage chronic care for themselves or other, this may seem all too familiar for you. I’m glad that we have each other in this path.

History:

Alexis aspirates liquids. Since March 2011, she has been able to try honey thick liquids. Apria has provided cases of Nestle Resource Dairy Honey Thick to our house in her monthly shipments. Alexis has had Cigna as her primary insurance and MassHealth secondary.

January 24:

Apria notified me that Alexis’ Nestle Resource Dairy Honey Thick was denied by CareCentrix because Alexis did not have ‘errors of inborn metabolism’. I did not understand this so I called Cigna to confirm what was the issue. I called Cigna and they confirmed with CareCentrix and Apria that if we got a new prescription from her primary doctor, they would resubmit it.

March 7:

I got a new prescription for Alexis to get Nestle Resource Dairy Nectar Thick from her primary doctor. In January, Alexis passed her swallow study and now is able to drink liquids that are nectar thick consistency. If the liquid is thinner than nectar thick, Alexis aspirates – which could result in pneumonia and hospitalizations.

May 17:

My husband faxed the new prescription to Apria.

May 20:

I called and Apria they said their fax machine was down the prior week and that I needed refax it. My husband refaxed.

June 10:

I called Apria to ask when we would be receiving the Nestle Resource Dairy Nectar Thick. After waiting on the phone for 45minutes, they said that it was denied by Cigna again and that I would need to call Cigna to find out why they aren’t approving the Nestle Resource Dairy Nectar Thick.

10am Cigna said they didn’t show any record of ever paying for Nestle Resource Dairy Nectar Thick. They said that if it was covered by secondary insurance, that CareCentrix would need to bill MassHealth.

4pm I called CareCentrix to ask them to add Alexis’ secondary insurance so that her secondary insurance could cover the payment for Nestle Resource Dairy Nectar Thick. They said that because Cigna is 100% payor, their contract does not allow them to add a secondary insurance to Alexis’ account.

4:15pm I called Apria back and asked them to add Alexis’ secondary insurance for this item. They said because Cigna is 100% payor, their contract does not allow them to add a secondary insurance to Alexis’ account. They did say we could pre-pay for Nestle Resource Dairy Nectar Thick and then seek reimbursement personally from MassHealth. This didn’t make sense to me, since from 2011 to 2013, Apria provided the Nestle Resource Dairy Nectar Thick each month.

4:30pm I called Cigna back and asked them why this changed in January. It didn’t make any sense that Nestle Resource Dairy Nectar Thick was approved from 2011 to 2013 and now it suddenly changed. Nothing has changed in Alexis’ healthcare or medical status. Gayle McGee in the Cigna Texas office spent 2 hours working on this last night and is going to continue working to investigate this.

Alexis has multiple congenital anomalies, including risk of aspiration based on her swallowing issues. This is well documented and her doctors can provide any documentation that may be required to explain her medical issues.

Latest update

June 17: Care Centrix person called from 913 749 5697 asking me questions about Alexis’ new formula that she’s requesting. I described that we still need the Pediasure 1.5 Cal and as well the new formula Nestle Resource Dairy Nectar Thick.

June 18 1pm: Apria called to inform me that Care Centrix called them and they are no longer covering Alexis’ Pediasure 1.5 Cal formula.

1:20pm: Called Care Centrix, they can’t do anything. Need to call Cigna. Call to Cigna says I have to get all of her Pediasure 1.5 Cal formula re-certified.

Alexis will end up in the hospital without g-tube food. She will aspirate liquids if she does not have the right mixture of thickened liquids. That will also result in a hospital stay. Momma Bear on a path and it’s not pretty.

Posted in Does this really happen? | Leave a comment

Saga Resolved

Got phone call from Apria asking if the order was complete, as they had autonotification that the package of Nestle Resource Dairy Nectar Thick had been dropped off at our house.

I told them that I work full time but would confirm the delivery when I got home.

June 21 6pm

I opened the box, hoping that our saga would be over.

Here’s a picture of the delivery, notice the photo includes their flyer saying “How are We Doing?”

I called Apria back urgently and said – this is not our correct order. We had ordered Nestle Resource Dairy Nectar Thick, not Nestle Resource Dairy HONEY Thick. They said they would call on Monday to determine what could be done.

June 21 9pm

I emailed VP at CareCentrix to let her know that we still hadn’t received the right order from Apria. Stay tuned, it gets funnier (I have an odd definition of funny).

June 24 10am

Apria called to let me know that they actually don’t carry Nestle Resource Dairy Nectar Thick, they only carry Nestle Resource Dairy HONEY Thick.

See here examples of the product – not very different. The manufacturing process is probably only “Add X amount of additional liquid to make Nectar instead of Honey”. Wait for the funny part:

Dairy Honey Thick

Dairy Nectar Thick

It’s made by the same company. One comes in purple, the other in blue.

They asked if I would be willing to take a different Nectar thick product like:

Apple Nectar Thick

So they asked for our pediatrician’s phone number to request a change to the prescription because Apple Nectar Thick is a different ordering code and thus needs different prescription.

In the meantime…… back on the planet of logic:

June 24 12pm

New company called me: GARANTHE MEDICAL SUPPLY from Norcross GA. They confirmed Alexis’ shipping address. They confirmed that we needed Nestle Resource Dairy Nectar Thick. They confirmed the quantity of 1/day. They confirmed they would be shipping a unit for the next day. And then that they would ship 2 more cases for a 3 month supply, then it would go month-to-month from there.

Wow!

June 25 6pm

I took this picture.

CareCentrix team called to confirm that we had gotten Alexis’ supply of the Nestle Resource Dairy Nectar Thick. I said yes, but not from Apria but from this new company: Garanthe Medical Supply. They said, “yes, we worked to get them started with Alexis’ case.”

Keep in mind, I did nothing to establish a relationship with Garanthe but thankfully CareCentrix went out their way to find a company who could supply Nestle Resource Dairy Nectar Thick for Alexis. Usually I have to send out requests to other parents to find out who supplies which product – so for me this was a great time saver after so many months without getting supply.

I do think it’s sad that it took so long for resolution but I have some observations:

1) Alexis needs very specific care, requiring a tremendous amount of coordination. While this was a particularly vexing issue for me. It wasn’t a life threatening situation. I know from Facebook and other parents – that there is the same run-around for all different sorts of reasons — many in urgent situations putting lives at risk.

2) There is no words to describe what I feel about Apria’s customer service – especially when I called on Friday at 6pm after they delivered the wrong item. They did not ship what was on the prescription for NECTAR. Instead they shipped HONEY. Now keep in mind, NECTAR is a thinner liquid than HONEY. So for a patient like Alexis, if they had shipped NECTAR instead of HONEY and she was only allowed HONEY – then this is very very dangerous (risk of aspiration / pneumonia / hospitalization). This is why patients and caregivers have to be tremendously vigilant about the prescriptions, medications received, medications administered ALL OF THE TIME.

3) I hate having to escalate to executives at companies but I will continue to do so as cases warrant. After six months of run around, my issue was resolved professionally in 8 days. I tallied at least 2 hours of waiting on hold with Apria, listening to random comments about how important my phone call was (Was it really important to them? Seth Godin has some comments: http://sethgodin.typepad.com/seths_blog/2013/06/your-call-is-very-important-to-us.html )

4) Alexis is worth it all.

Posted in Does this really happen? | Leave a comment

“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.

What 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.

The 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.

And 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.

Until 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!

Posted in Does this really happen?, Pain Points, Reaching to Others, Stories of Hope, What if Healthcare | Leave a comment

A little story

Sitting here at a Healthcare conference: MedCity ENGAGE!blog_fax

ENGAGE is the one place that gets the entire ecosystem together to best understand the patient and consumer engagement trends that sit at the core of healthcare innovation and reform. You’ll hear from payers, providers, policymakers, health IT and beyond; we’ve gathered together the most innovative thinking to offer and discuss the latest strategies, ideas and solutions to one of healthcare’s greatest challenges.

fax

Just heard inspirational talk from Aaron Sklar (former IDEO design guru now at Healthagen) – talking about how technology should fade into the background and how we can use design to engage better! Well, that was preceded by Merck’s Sachin Jain who discussed some powerful patient stories – showing how we have data we don’t use but should be used. I’ve simplified – but essentially thesis was that we have a lot of technology already and need to make better use of data and technology.

So I wanted to share my personal ‘circular’ / ‘technology’ story:

9/12

  • Daughter had overnight sleep study at hospital

9/30

  • Doctor calls from hospital to inform me about test results (called home phone, I’m traveling)
  • Home voicemail transcribed and sent to me via email
  • I called back the number listed by the doctor. Got robo circle for the department, voicemail transcription garbled doctor name.
  • I called back the number listed by the voicemail – managed to get Doctor directly.
  • Chatted about results and next steps.
  • Emailed another doctor on our team to discuss more options for treatment.
  • Remembered I forgot to ask about other specifics in the report.

10/1

  • Emailed our local pediatrician’s office, who has direct connection to hospital
  • Nurse said she could get report for me
  • Nurse asked for my fax number
  • Nurse faxes to husband
  • Husband scans in the document
  • I read the document while traveling and also forward to my sister (who is ER doctor for her opinions)

I’m thinking this could have been easier. I have a patient portal with my hospital . . . Sigh. One day, I see it possible that we can connect technology to save money, resources and unnecessary waste in the healthcare system.

In the meantime, I will work my hardest to get best care for my daughters’ health.

Posted in Does this really happen?, What if Healthcare | Leave a comment