Expect Miracles.

What I’m going to post here is my notes/speech that I gave to the students at a local high school a few weeks ago. The class is “Intro to Health Services” – something like that – and is basically for students who know they want to go into the medical field in some way as a career. We were invited there by our friend who is in the class after she wrote a project about mitochondrial disease, and her teacher was interested in having Kendall and I come in to talk about mito, as well as what is it like to be a parent in a situation like this. I was instantly in love with the idea – I mean, getting to talk to baby doclings BEFORE they become baby doclings??? Yes please!

So here’s kind of a synopsis of what I talked to them about. Some of it may not flow really well as a blog post because it was written for a live studio audience so….try to roll with it.

First I just want to tell you all that I am so impressed that you already know that you’d like to go into medicine. I’m sure you know that it will be a long hard journey, and that there will be times you may want to quit and give up. But it is my hope that our story will help inspire you in some way.

Because the truth is, Kendall would not be here today if it were not for some amazing doctors and nurses who sat right where you are sitting many years ago. They knew that medicine was their passion, and helping kids was what they wanted to do, and I’m so very glad they decided that.

I’m going to read you a list of some of the diagnoses that are listed on Kendall’s current medical chart that her hospital uses. You may have heard of some of these, and others you may never hear in your entire medical career:

• Deep Venous Thrombosis
• Intestinal Pseudo-obstruction
• Mitochondrial Disorder
• Chronic DVT of upper extremity
• Recurrent Bloodstream Infection
• Klebsiella sepsis
• Anemia
• Gastrojejunostomy feeding
• Heart murmur (open Patent Ductus Arteriosus)
• Shock, Septic Shock
• Gram negative Septic Schock
• Purpura Fulminans
• Disseminated Intravascular Coagulation
• Septic Shock due to Klebsiella Pneumoniae
• Warm Septic Shock requiring Epi/Nor-Epi
• Catecholamine Resistant Shock
• Bacteremia
• Endocarditis
• Acute Respiratory Distress Syndrome
• Renal Insufficiency

And there are three other pages, but you get the idea. This kid has a lot going on in her little body.

But there’s one more diagnosis that you won’t find listed on any of her charts, even though everyone who works with her knows it’s there. I want you to know that you WILL see  this at some point in your career, and I hope you recognize it when you see it.

That diagnosis is MIRACLE.

You may not know all those other words I just read – yet.

I wish that I did NOT know them, know intricately how very scary some of those words together mean, know what it is to have a baby that sick. I wish I did not know the panicky fear of hearing that my child’s blood pressure is “30 over palp” – which is basically non-existent. I wish I did not know what “code blue” really meant, and I wish I didn’t know how blue a body can turn when it has stopped functioning properly.

But I am SO glad that I know the true meaning of the word “miracle”. Because this little girl right here? She is one.

I could go on for hours about all that Kendall has fought through – not just this past year, but her whole life. I’ll try to give you the Cliffnotes version…
Kendall was born not breathing and was immediately rushed to the NICU at our hospital – we had no idea what was going on as we expected her to be a bouncy healthy baby girl like our older three had been. It was unbelievable to the doctors there that anything could actually be “wrong” with my full-term infant, and they kept telling us that she would just one day grow out of it. Grow out of not breathing, not eating, not gaining weight, not moving. That attitude followed us around the first 8 months of her life. Doctor after doctor tried telling me that Kendall “just had reflux” or “she’ll wake up one day and be totally fine”. Her diagnoses were piling up faster than I could Google them, but no one could help us put the puzzle of her together.

Some of her doctors now joke that I’ve earned my honorary MD degree – and it’s mostly true. I earned that degree with so many late nights, reading medical journals, articles, anything I could get my hands on that might help me figure out how to help Kendall. I looked up the words I didn’t know and I googled high school chemistry diagrams of the Krebs cycle. (Side note – study that. The Krebs Cycle will come in more handy than you may ever know! I did not pay attention then and it is one of my biggest regrets in life – as we know Kendall’s issues lie somewhere in her body’s inability to complete the Krebs Cycle with any kind of predictability!) I read and I read and I read, and I absorbed EVERYTHING i could. I questioned her doctors and I didn’t take NO for an answer, and somehow, through all of our  ups and downs, I can say that I have EARNED the respect of our medical team.

It was not an easy or a smooth road. There have been many many many frustrating ER visits, late-night admissions, even whole hospital stays that were more frustrating than helpful. I know that part of why your teacher asked me here today is because she wants you to hear a little bit about the medical field from the OTHER side, the perspective of the parents/patients you will be working with. So I’m going to give you a little glimpse into how things go at our hospital, which is a teaching hospital, and maybe prepare you a little bit for the kind of craziness you’re getting yourself into!

When you are in medical school, you may start doing “rounds” at a teaching hospital. Maybe you will be doing your clinicals for nursing school there too. Either way, you will be nervous. You may be EXTREMELY nervous. And no matter how much you think you are hiding it, you won’t be.

At our hospital, once you’ve been admitted to “acute care” (the only floors medical students and nursing students can work on), you’ve probably just spent a good 4-5 or more hours in the ER watching paint dry, and by the time you get up to a room, you are exhausted and worn out and just want to crash. But first we have to deal with what I call “the parade of doctors”. Your “senior” (who isn’t really a doctor himself yet) has assigned to you the legwork job of going to “get history”. Even though the ENTIRE FIVE YEARS OF HISTORY is in the computer and you could probably answer every question you might have by spending ten minutes reading the clinic notes in the patient file, this is part of the job so you come in with shaking hands, your short jacket pockets stuffed full of reference materials and notebooks and charts. If you’re REALLY unlucky you get a mom like me, who is tired and cranky and just wants the right meds put in as current active orders and to pull out the “boxes of bliss” (as the wooden hospital beds are referred to) and CRASH! I will be able to rattle off her meds before you can even stumble over their pronunciation in the computer and give you history in five minutes flat and tell you to just send your senior in so they can do their assessment and we can all go to bed. But if I could tell you anything that might help you get through these frustrating scenarios, it would be to really LISTEN….

The doctors who have been the most amazing in Kendall’s care are the ones who took the time to listen, and to hear beyond the words I am saying and understand what they really mean. They heard that when I said “My baby screams all night long” what I meant was “None of my kids are getting any sleep, I’m non-functional as their mommy, and my whole family needs relief”. Her doctors have learned that when I call and say “I’m not sure what’s going but I think something’s up with Kendall and I’m going to bring her in” – that it usually means something is wrong that needs some pretty good attention. It could be something like “she doesn’t want to play with playdoh at all” or something as scary as “her  blood pressures are all over the map and she’s third spacing her fluids with a temp trending upwards” – but whatever my “concern” is, they have learned – just as I hope you all eventually learn – “Moms Know Their Babies”.

Your mom knows you. She may not know if your blood pressure is too low and she may not be able to throw medical terms around with ease, but she knows if you aren’t feeling good. Moms ALWAYS know what’s up. Don’t forget that!

So here’s the things I want to leave you with:

Learn what it means to listen to, and really HEAR moms/families. Put their words into the “big picture” and look at all the different things that are affected by whatever issue you are helping to treat. Hearing the words from a nurse “I believe you and I want to help you” moved me to tears one particularly hard admission, and they turned the whole stay around. Be willing to be open to HEARING what is going on.

Remember WHY you are doing this. When you cannot absorb any more info into your head, and you are exhausted from a 36 hour shift in your residency, remember what made you love medicine in the first place. Usually it’s because of PEOPLE. Focus on the fact that your patients aren’t just a room number or a set of symptoms – they are someone’s mom, someones child, someone’s dad, sister, grampa. Treat them as if they were YOURS.

And finally – Expect Miracles.

there will be tough times. You will not always be the hero. you will order meds in the wrong dosage or you may even lose a patient you were giving chest compressions to. But for all the dark times, there will be amazing moments also. Don’t get so wrapped up in the science of it all that you forget one thing – the human spirit, the will to LIVE, is an amazing thing. Give it your best, and realize that there will be times when the outcome defies science. Embrace those times.

This girl right here? She’s one of them.

 

 

T.