Friday, October 5, 2012

Question Answered

Question:  I know where you lived when Luca was diagnosed, and I know there was a hospital in that area that could have taken her yet you guys ended up at hospital 2 instead. I must have missed the story of why that happened. I am glad it all worked out, hospital 2 is an AWESOME facility, but I wonder why they didn't transfer you back to the closer hospital so you didn't have to commute or move. Or am I all confused? ha. Totally possible. 


This question refers back to the beginning of our journey with Luca.  It all started on that day.  We lived in Baltimore and delivered at a hospital in Towson.  When Luca got sick, she was transferred to University of Maryland's hospital in downtown Baltimore.  Less than 24 hours later, they decided she needed to be transferred to another hospital.  This is where things get a bit weird.  

They called Johns Hopkins, which is less than 10 minutes away.  We have heard mixed reasons as to why she did not end up at Hopkins.  Either they were taking way too long to respond (as in, over 2-3 hours) about whether they would take Luca, or they refused her as a patient.  I am not even sure if they were legally allowed to refuse a patient.  But the bottom line is that they were not willing and/or ready to take her.  

Luca needed a surgery team to place a dialysis catheter below her clavicle.  She was in a coma.  She was having trouble breathing.  She needed intubation.  She was having nonstop seizures.  She needed several teams of doctors there when she arrived to start saving her.  Surgery.  Metabolic.  Neurology.  Dialysis team.  Nephrology.  The fact is, they needed people who were experienced to come in at 4am on a Monday morning.  I am not sure if there was hesitation because she needed so much help and they were not ready, or whether they could not handle her.  I do not hate Hopkins by any means.  In fact, we know many people who have had good experiences at Hopkins.  But I do think they should have been jumping to save a child so desperately in need of care.  

Luckily,  Children's National Medical Center was on top of things.  As soon as they got the call, they said YES and put their helicopter team in the air to get Luca from Baltimore.  They were calling me as soon as they had hung up the phone with Maryland.  The surgery team, the metabolic doctor, the nurse transporting her in the helicopter.  I heard from them all within an hour, getting consents so that as soon as she touched down at Children's, they had nothing stopping them from working on her.  I do not mention Hopkins often when I discuss this story, because I rather just give good publicity to Children's than bash Hopkins.  But this story is part of the reason I always jump at every opportunity to give back to Children's.  They simply said yes when our child needed help.  There was no hesitation.  And it is why I believe it is the best children's hospital in the area.

After Luca was discharged from the NICU, our metabolic doctor told us we could transfer her care to Hopkins so that it was closer to home.  We declined the offer.  We had such a wonderful team of doctors that we had built relationships with at Children's.  And I wanted Children's to get our "business" because of how they handled her transfer in the beginning.  Hindsight is 20/20, and in our case, she ended up exactly where she needed to be.  I would not change that ever.


Leave me your thoughts!