Wednesday, March 6, 2013

A children's hospital for Richmond

I hope I don't regret writing about this... but I have been feeling so utterly embarrassed for a few days and I'm hoping that telling MORE people about it will help?!?!?  Sometimes I think I'm so goofy it's not even funny.  But, the truth is that writing here doesn't feel like I'm talking to a lot of people.  It feels like I'm just writing in a diary, and I usually feel better afterwards.  So, I guess I'll give it a go.

Okay, so you know how we had that awful experience in the hospital, right?  Well about a week ago we got this invite to attend this discussion about building a full service, free standing children's hospital here in Richmond.  A group of pediatricians started an organization called PACK (Pediatricians Associated to Care for Kids) to try and get this movement going.  I think there's been talk of building a children's hospital for a really long time, but too many problems arise and I guess they just haven't been able to figure out the solution to those problems.

I will try to explain the current situation and I hope I'm close to being accurate.  But, don't hold me to anything, okay?

The hospital that I think offers the best pediatric care here in Richmond is VCU/MCV.  The pediatric department is within an adult hospital.  They are trying to make some changes and one of those changes was their name - Children's Hospital of Richmond at VCU.  They have the association with MCV (Medical College of VA).

If a full service, free standing children's hospital were to be successful here, they would need the association with a medical school (clearly MCV would make the best sense since it's here).  The problem I think, is that VCU isn't on board with the whole idea.  It's complicated.  And I have asked several doctors I know, and I still walk away confused.  I just don't understand how it all works business-wise.  I think a little bit is that they think they are already providing what we need.  But, for what it's worth, we've been patients at three dedicated children's hospitals and I can tell you, for a fact, that Richmond doesn't have anything close.  It's not the physicians that are necessarily lacking (although don't get me started about the one from last week) and keep in mind that I love all her doctors here.  It's the facility.  The building.  The environment.  The passion and attitude of all the nurses, doctors and staff.  It just seems that if they combined efforts, an even better system could be available to our kids.  And how could that be a bad thing?

So, PACK is trying to get the community educated.  It's hard to believe, but most people who live here have no idea that we really don't have a children's hospital.  And if they know about VCU/MCV, they most likely would take their injured/sick child to the closest hospital for convenience instead of going to the location that would give the best care.  MCV is downtown and not convenient and most of the parents where I live would take their kids to St. Mary's instead.

Anyway, I knew about this movement, but to be honest, I just don't have the energy.  My plate is full and my energy is spent in other areas.  But, then we had that awful experience.  And while MCV has usually been satisfying, all things considered, this time they came up short.  The care in the GI specialty is inadequate.  Period.  And quite frankly, I'm betting there are some other areas that are the same.  When it takes weeks and weeks to see a pulmonologist (even if the child has pneumonia) I'm thinking they are short staffed and over worked.  And when you're the mom of a kid like Harlie, that sounds kinda dangerous.

This "meeting" was on Sunday night.  I was still tired from the events of the week, but we made arrangements and went.  I was really surprised at the number of people that were there on a Sunday night.  We're guessing there were about 150 people in attendance.

A few moms spoke and told their stories.  They had a few pediatricians and a pediatric anesthesiologist who spoke as well.  Everyone who spoke did a great job.  At one point they said they wanted to hear from the audience - stories, questions, whatever.  Tom tapped me on my leg and said that I should say something.  I guess at the time I wanted to tell them that we are a family that has had to travel to four separate hospitals, here, Norfolk, DC and now Boston.  Why did I want to do that?  WHY?  As I was sitting there, I knew if I were going to speak I had to just do it and get it over with.  If I thought about it too long I was going to chicken out.  I should have chickened out!!  But, I didn't.  And I freaking stood up in front of all those people and told them as briefly as I could about Harlie and how we are now having to travel to Boston.  I don't know how long I spoke.  It seemed to be very quick.  But as I remember some of the things I said, I can't believe I got that much information out that quickly!  I must have been talking a mile a minute.  Well, I was pretty nervous.

I think the second I stood up and she gave me the microphone, I thought, What the hell am I doing?!  I wanted to say, Never mind, forget you ever saw me.  But, it was too late.  Instead I told them that my daughter is 6 years old and has had 32 surgeries, 5 on her heart, 3 major jaw reconstructions, 2 craniotomies, she's had most of her right lung removed, etc. and blah, blah, blah.

As I was talking and looking at the shocked looks on people's faces, it occurred to me that her medical history sounds really bad when you just blurt it out like that.  It doesn't feel as bad when you live it day to day.

At one point during my... whatever you want to call it, I realized I didn't know how I wanted to wrap it up.  What was I trying to say?  What was my point for crying out loud?!?!?  Ugh.  I would have been better off thinking about it a little longer before raising my stupid hand.  It's all Tom's fault anyway.

I think I wrapped it up with... so, now we're traveling to Boston and it's amazing, blah, blah, blah, so having a children's hospital here would be really great.

Seriously??  So, looking back, I feel like a total tool.  I've been trying to not be so hard on myself, but I can't help it! I wish I could go back and never stand up.  As I tried to go to sleep that night I literally was in physical pain from the embarrassment.  I wanted to crawl in a hole and never come out.  Before the Florida sinkhole disaster (so sad!) I would have said, "I wanted the ground to open up and swallow me whole" or something like that - but I will NEVER be saying that again.  EVER.

I've been thinking a lot about it - trying to make my feelings go away.  But, it's complicated.  Here's what's going on in my head...

I don't like to be the center of attention.  I just want to live my life, have my wonderful friends and family and keep on trucking.  When I write here, I don't make anyone read it.  Ten people might be reading, or maybe hundreds.  I don't know.  But, I'm not making you do it.  Standing up and holding a microphone... well that feels like you're making people listen to you.  And everyone was looking at me.  I'd rather be in the audience.

I don't like to complain nor do I want to be viewed as a complainer.  Those people only know what they saw and what I told them in those few minutes.  They don't know the real me.  What did they see?

I'm clearly conflicted between living my life in private and sharing my story.  I've been asked about local news media before, and the answer has always been, no thank you.  Some days I think, her story needs to be told!  And some days I think, why should anyone care about her story?  Why does it matter?  It's just our life.  And we are living it happily.  So why is it a big deal?

I should have said something different.  What I should have said is that out of her 32 surgeries in the past 6 years, only 3 have been done in Richmond.  THREE!!  Which means that during the most stressful times in our life, we have to split our family apart, leave our children with others, and travel to another city, without any personal support network and no visitors.  This is considerably more difficult emotionally, and financially.  Tom has to pick and choose which surgeries he can be there for - and most of the time he can only stay for a few days.  Although, even after thinking about that - I don't think many people could relate to that.  Let's face it, we're not the norm.

I think it's safe to say that I'm better when I write my thoughts down versus jumping up and speaking to a crowd on the fly.  Seriously?  Have I lost my mind???

Thank God a few people said, "Thank you for sharing your story" on our way out.  I'm hoping that means they didn't see me the way I fear they did.  I would also tell myself that no one is going to remember what I said.  But, when I stood up and turned to face the crowd (we were sitting near the front) I noticed that it was being recorded.  As in video.  Awesome.  Can I go cry now?

I will say that overall, I'm glad we went (not glad I spoke, of course).  And for all my local readers, I want to share this...

One of the pediatricians that's passionate about this hospital being built asked the crowd if we knew where to take our child if he or she broke an arm.  Because there is only facility in Richmond that has a pediatric orthopedist on call 24/7.  "Do you know which one?" she asked.  She didn't say.  She then went on to say that her daughter broke her arm.  And she took her to a place that she thought was good.  The ortho (not peds) set her arm, which she found out later, was set incorrectly.  She then had to go to a peds ortho and have it re-set, correctly.

Another point they made is that all our pediatric hospitals are in adult hospitals.  Which means that our kids have to conform to the facility, instead of the facility conforming to kids.  I'll give one example of that... the elevators coming from the parking deck at MCV.  There are two.  And they are really small (and slow).  There are 8 levels, I believe.  More times than not, an elevator would stop on our floor and we couldn't fit in it with Harlie's chair.  And it's a small wheelchair-type stroller.  I've had to wait for several elevators - before one stopped that we could fit in.  It's not fun.

Anyway, I hope that we have smart enough people on both sides that they can figure out where the problems are and how to fix them.  As one of the doctors said on Sunday night, every other city our size has figured it out.  Why can't we?  So, if you're local, please check out the PACK website and read the FAQs.  

Okay, that's it.  Let's never speak of this again, okay?  ;-)

Thank you!
Christy xo


Susan said...

Oh my gosh Christy you are funny. I'm sure it was great for the group to hear from you. I think we all hate speaking publicly and afterward it's natural to think of what you could have said. But you did it so be proud of yourself. It takes guts.

Did you actualy say that a pediatrian's child broke her arm and the doc didn't know where to take her to get it properly set? That is crazy and messed up. And what you say about 3 of 32 of Harlie's surgeries being done locally, that says a lot. I hope you get a children's hospital.

Don't beat yourself up. It would be difficult to boil your experience down into a concise speech even if you spent hours writing it the night before. No being swallowed up in holes you hear?! Hugs.

Lisa B said...

As Susan (above) said, we can all go back over things we've said and wish we'd said things differently. I think you did just fine.

Grandma said...

oh Christy...why are you doubting yourself??? I do not understand! You have a story to tell about how hard it is to be away from home, how you had to spend endless hours researching physicians out of state to help with Harlie's issues, how expensive travel is, time lost and no visitors...THIS STORY NEEDED TO BE TOLD! It is a shame that such a big city/area does not have a children's hospital. Think of the time and effort that would have been saved in the past 6 years. This will not be an easy project for your town but hopefully, the ball will start rolling and progress can be made. You need to be a part of this...your have a personal reason to be involved. And, if talking to a group of people on that behalf is what it takes...YOU GO are an awesome speaker and I am sure your were applauded!

kadiera said...

I think it takes the really complicated situations to make people understand. Not just "the doctor at hospital X didn't know how to set my child's broken arm" but the ins and outs of hospital life with a complex child.

Still...even though I know my kids aren't nearly as complex as Harlie, I hate having to start that discussion about their history with anyone. In my head it sounds like I'm trying to one-up people with how complicated my two are. And that's not it at all...

Our "home" hospital is one of those children's hospitals in a regular hospital sort of deal. Peds is one floor - NICU, PICU, and the regular floor. There's no cardiac floor (we got shipped an hour away for heart surgery) and no place for a vent kid, no matter their reason for being there, but the PICU. Meal service is room-service style, but getting anything not on the menu for a kid with feeding issues is nearly impossible (to get veggies for Alex, we order a sandwich and toss the bread and meat, to get pureed food for Bethany required a phone call to a supervisor - the food choices are geared towards parents, not kids).

There's a pulmonologist (Alex is seeing him now), but no one who does vents (Alex & Bethany have been to 2 other somewhat distant hospitals for that). There is a large ENT practice, but they do tonsils and ear tubes and not much else - they balked at seeing Alex even without a trach, because of his history. They have a new craniofacial team, but I haven't heard anything about their success (and friends with children with cleft palates and lips have all gone an hour or so away to a "real" childrens hospital for that sort of repair).

I'm sure you did fine. :) I always feel like I was rambling when I do things like that, but later reviews of the tape show that I did as well as anyone else.

Sue Mitchell said...

I'm sure that you are your own worst critic and I for one am glad that Tom convinced you to tell Harlie's story - who better to tell it? My wish is that someone there will tell someone else and have you come back and tell it again and next time, you can add the stuff you think you forgot to mention. Harlie's situation is an excellent example of why there is a tremendous need for a children's hospital here. Therefore, people need to hear from parents like you. You go girl!

Tiffany Carr said...

Hi Christy! I just happened to stumble upon your blog for Harlie., researching some things related to PACKids. I am a parent of a child, who like you, is seen by multiple specialists. My daughter is 10 months old and was born with a rare genetic condition called, Craniosynostosis. We traveled down to Miami Children's Hospital for Cranial Vault Reconstruction. I want you to know, I was present at the meeting where you spoke. I have been in constant contact with Dr. Melissa Nelson (Pediatrician) and some of the other parents who spoke. When you told your story, I remember thinking how much we had in common and actually how WELL you spoke! You said everything perfectly, I was completely inspired by your strength and passion! You were probably the parent who stood out to me the most. So, PLEASE don't doubt yourself! I know you made a difference! Contact me if you want. I feel we could share a lot! Tiffany. (

Christy said...

Wow, Tiffany! Thank you so much for writing and telling me that. I can't tell you how much better that makes me feel!

Thank you so much!
~Christy xo

Anne Maliff said...

Tiffany is completely right! I was also there, remember you and thought you did a great job. You were so good I thought you had been planted in the crowd for effect. Thank you for speaking because people need to hear stories like yours to understand how fragmented our system is. Our kids don't get the same healthcare that's available in other areas. I, too, have a child with special needs and until the PACKids cause, I had always backed away from telling our story because of privacy issues. But if exposing my family's health struggles can get this hospital built and save other families from going through what you and Tiffany and I have experienced, then it will all be worth it. Thank you and keep up the noise! Richmond kids need this hospital and people like you. Hold your head up high!