“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!

This entry was posted in Does this really happen?, Pain Points, Reaching to Others, Stories of Hope, What if Healthcare. Bookmark the permalink.

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