Then, again, while I was reading her bedtime story, she did it again. This time her little hand shook a little while it hovered over her lower jaw. I put down the book and told her to let me see. I pulled her lip down, which is not an easy task (her skin is very tight around her jaw) and I found the source of her pain.
She has a tooth that has come in on the bottom right. It is her "S" tooth for those of you in the dental-know. Her jaw has no room for all of her teeth. So, this one popped out the front of her gum line. It protrudes forward. And it has rubbed a hole in her lip and it appears that the tooth sits IN the hole. The hole is an open sore - like a really big ulcer. Doesn't that sound so painful?
I want it fixed. Like now.
Of course, it's not that easy.
First, I emailed her surgeon in Boston. She said to find out if the tooth is a baby tooth or permanent tooth. If it's a baby, we pull it. If not, we discuss further.
I then called her dentist and they got her in the very next morning. Yes, it's a baby tooth ("S" tooth, baby teeth are letters, permanent teeth are numbers), thank God for small favors. Now to find someone to pull it. I should say "extract" it because pulling it sounds simple. And, as you might have figured out, nothing is simple with Harlie.
Later on that night, Harlie sat in the kitchen floor and did this...
Later on that night, Harlie sat in the kitchen floor and did this...
I never discussed her tooth issues with her. Just with her doctors, around her. Clearly she understands. And knows this means the Tooth Fairy is coming. Yes, sweet girl, the Tooth Fairy will not forget you.
Due to her heart and lung issues - she cannot be sedated at any outpatient clinic or setting. She needs more monitoring, and that has to be done in an operating room, under general anesthesia.
Numbing the area and pulling it - like some might be able to do - is not an option, either. There is no way that Harlie would ever cooperate for that. Please remember that this girl has been through more in her life than most can even imagine. She is very fearful and the experience would only cause her more trauma. PLUS, since her mouth is very A-typical, they have no idea what's involved with extracting this tooth.
So, they will need to put her under, take x-rays, and then figure out what to do from there.
The only facility here in Richmond that I'm comfortable with her going under anesthesia is VCU. So, I made an appointment with the VCU dentistry, pediatric department. They got us in for the very next day, which was today.
At first, I was pretty annoyed. I tried to read about the dentist that we were seeing and I couldn't find her anywhere on their website. So, I called to ask and was told that she is a resident. While I understand that a resident is a dentist, I knew this was too much for a resident. And I just didn't want to go down there, have a resident look at her and her history and then tell me I had to bring her back to see someone else. It was a frustrating conversation with some "IF she needs it pulled" and "IF she needs anesthesia" as if I had no idea what I was talking about. Ultimately, I gave up and thought we would have to go just to get in the door and take it from there. I vented to her cardiologist, who told me that once they met her they would understand, so I should relax. He was right.
When I checked in for our appointment, she told me that they re-assigned her from the resident to a faculty member. I promise I don't want to be insulting to a resident, but I really feel like Harlie's earned some sort of gold star, premium membership, fast-pass, kinda thing. She really shouldn't have to mess around anymore. She's seen more than her fair share of residents in her lifetime.
The practice was very nice and compassionate. I handed over Harlie's five page medical summary and they listened. Based on her previous jaw work and crazy mouth, they felt that an oral surgeon would be best to do this, along with an oral maxillofacial surgeon's involvement.
They warned me that there was a wait for surgery dates. So, I asked what do we do if Harlie's pain becomes worse or unbearable and he said, "Let us know and we'll prescribe something." Hmm.
But, since I didn't know a date yet, there was no point in arguing. They sent me to the scheduler next.
She sat me down and gave me a date - January 22, 2015. WHAT?!
She saw my face and she started explaining. She was awesome. For real. So compassionate and understanding. She said that they only get two days per month in the OR - the first and last Thursdays of each month. Considering her pain, she put Harlie on the hot list, which is a list of kids that need to be worked in ASAP. As they get cancellations, she works them in. I asked her how likely that was and she said highly, thanks to that enterovirus going around.
Clearly, I am upset. The thought of waiting almost four months to relieve Harlie of pain KILLS me. Not to mention that her having an open sore in her mouth makes me very nervous about the infection risk. We've been there, done that, more times than I care to remember. And it's always been horrible. Her infections have never followed the norms, either. Because I never would have anticipated a four month wait, I didn't go over her infection history with them. I wonder if that would have made a difference at all?
I totally get that their docket is full. And I totally get that there are other children with pain related issues that are also waiting on their OR times. I don't want to bump another child so Harlie can be seen sooner. I don't.
What I want, is to have a facility here where children don't have to compete with adults and fight for OR times. I want a facility that can operate on her when it's appropriate for her, and not just put her in line. As many times as Harlie has had to go into an operating room (40 surgeries, people!) we have NEVER had to wait almost four months for a surgery date. Never.
I put something about this on Facebook today and was astounded at the response I received. So many caring friends offering to call people they know to see what they can do to help Harlie. I wish I was the kind of person who was comfortable with this sort of action. But, we need our local docs for the long haul, and the last thing I want to do is piss them off, or burn a bridge. I don't want to have to have someone pull some strings. I just want a facility that runs with the best interest of children in mind. And having a child with heart defects wait four months for a surgery that involves an open sore in her mouth sounds like it's not in her best interest.
But, then I remember all the infections. And I know her history. And the thought of this going the wrong way terrifies me. After all she's survived, what if it was a stupid tooth that took her down? And I was too nice to let people help. I would never forgive myself.
While I am mulling that over, I have already gotten a call in to Children's National in DC and I've emailed her surgeon in Boston. I really don't want to have to go to Boston for this. But, I am curious as to what kind of wait they have, just for comparison purposes.
As much as I would like to stay local as much as I can, this is exactly why I leave Richmond. It has nothing to do with her doctors. I am very happy with them. And VCU has a great PICU, with great nurses and doctors. But, navigating this system, and knowing that kids come second to adults makes me take her elsewhere. And so many people here think we already have a children's hospital. Crazy.
Well, it is late and tomorrow is another busy day. Harlie has an appointment with the feeding clinic in the afternoon. I'll let you know how that goes.
Thank you so much for caring about our sweet girl!