Thursday, April 19, 2012

BAHA Consult Appointment

Today we went to Children's in DC to meet with a surgeon about a BAHA (bone anchored hearing aid).  She wears one attached to a soft head band now.  But, this appointment was to talk about getting one surgically placed in her skull, on her left side, which is the side without an ear canal.

When they called me to schedule the appointment (since we were referred by her ENT there, they contacted me) she told me that the surgeon likes for both parents to attend this appointment.  Well, at this point, after ALL the appointments we've had, that caught me by surprise.  Heck, I've taken her to heart caths and cardiology appointments by myself, which I find to be much more complicated subject matter than a BAHA.  Why all the fuss???

So, I politely explained that he most likely would not be able to attend, but I would check anyway.

Of course, he couldn't come.  He's busy and with a job like his (100% commission) that's awesome and I do not want to take him away from providing for our family for a BAHA appointment.  Not to make light of it, but I just couldn't imagine the information would be so difficult or involved that I would need him there.

So, this morning, off we go to DC, me, Harlie and Terri.

We arrive and wait a while before I get called to check in.  Keep in mind this is checking in - at the registration desk in the waiting room where everyone can hear what's being said.

The woman asks me, "Is Dad here?"  I said, "No, he couldn't make it" thinking that would be the end of it.

Nope.  She looks at me like I've lost my mind and stammers a bit, and looks around for help, backup?  I don't know.  Another employee sees her distress and asks what's the matter.  She tells her that Dad isn't here for a BAHA consult, pointing at me.  Ohhhhh.  Now two women have looks of distress (and judgment towards me, quite frankly), which attracts a third, older woman to the "situation."

This older lady has her arms crossed and literally looks down her nose at me.  Like I'm super crummy and have committed some sort of crime.  I can't remember word-for-word the conversation.  Probably because I had to focus on remaining polite and not letting my anger make the situation worse.  I really did not want to start off a new doctor-patient relationship on such a negative note.

But, basically they seemed to be questioning what to do - as if there was something to do about this!  I jokingly told them that Harlie's had over 20 surgeries, I think I can handle this appointment without my husband here.  When that didn't appease them, I further explained that if he attended all of her appointments he would no longer have a job.  When that didn't satisfy, I told them that she just had pacemaker surgery last month and he couldn't be there for that, either.

So, back off bitches and stop judging me and my marriage!

Well, that's what I wanted to say, but didn't.   And I never (okay, super rarely, since I just used it) use the word "bitch."  I think it's pretty ugly and it's only acceptable when used in a funny way.  Which is how I just used it, in my opinion.

Aaaaanyway... The older lady (the one who looked down her nose at me while her arms were crossed) said something about it "being their policy."  What?  Well, that's a stupid policy is what I wanted to say, but didn't.  So, I said, "that's assuming that the Dad has an active role in decision making."

Which, Tom does, of course.  But I was trying to make a point.  Let's get real... Tom trusts me to do the information gathering when it comes to her medical stuff.  We discuss and we make decisions.  After all we've been through in the past six years I think we've gotten into a pretty good groove (as good as we can considering the circumstances).  And this groove wasn't exactly a choice - this groove was formed out of necessity.  Our life turned upside down and we had to adapt.  Simple as that.  No need to judge us.

I know when he will be fine with a decision I make.  I know when he will want to be more involved with a decision.  And before I get ahead of myself - we weren't even at decision making time - THIS WAS INFORMATION GATHERING TIME!  So, what's the big freaking deal?

I was pissed.  And terribly offended.  Couldn't they see that I am seasoned?  That I'm somewhat intelligent and would be able to understand the information given to me without my husband there to help explain it to me?

I don't understand their angle on this "policy."  And talk about beating a dead horse!  Geez Ladies - you've made your point.  But he's not here and he's over 100 miles away right now.  At one point, one of them said, "Well, we really want the Dad to be present."  Oooohhhhh!  You want that, do you?  Well, I wanted a healthy baby.  News flash - we don't always get what we want.  Again, that's what I wanted to say.  But didn't.

So, I returned to my seat in the waiting area (about 7 feet away) and stewed somewhat silently.  I was kinda worried about how the surgeon would take it that we were there without Dad.  We got called back and luckily my social worker came to see us.  She stayed for the appointment.  And when the surgeon came in, she didn't seem to have any reaction to no Dad being in the room.

The appointment went fine and I learned a lot.  Apparently, I'm intelligent enough for that info.  Here's the basics:

A BAHA placement is a two-surgery process.

The skull needs to be 3ml to 4ml thick in order to implant the device.

There are no tests/scans to accurately show the thickness of the skull in every area.  And the skull can be 2ml thick in one spot and 4ml in a spot 1cm away.  This means that she just has to get in there and drill and see what happens.  If she drills and can't find an adequate spot, then she closes up and no device gets implanted.  And you wait for the skull to grow and try again in a year or years, even.

If she finds an adequate spot, she implants it.  The thicker the skull the better success at the implant "taking" and healing correctly (4ml or more is desired).  At 3ml, the risk is higher that the implant will be rejected or kicked out (she used a different word, but I can't remember it).  Damn!  If only Tom had been there.  Just kidding.  My social worker will remember.  Doesn't matter.

Extrude!  I think it was extrude (meaning to push or thrust out).

After implanting, you wait 6 or more months for it to heal.

Then they thin the skin that's covering the device and remove the hair follicles in that area, and they place the abutement, which is the thing that holds the actual processor (hearing aid) on the head.


Then you wait another six to eight weeks for that to heal before you can click the hearing aid on the abutement and use it.

Whew.

See?  That's not complicated.  I really don't want to offend anyone who's gotten a BAHA and found it overwhelming or difficult.  I'm just saying from my perspective, considering all the medical issues we've had, I found it to be pretty understandable.

Risks:

As I said earlier, the device could be extruded, if the skull isn't thick enough.

And since she's using a drill to the skull, which is covering her brain, there is a risk that the drill could touch/damage the brain.  She said she's never had that happen.  I told her the word "never" when used medically, is not comforting.  I guess she drills a tiny bit at a time until she hits the dura and then stops.  I am somewhat familiar since Harlie's had two craniotomies when they harvested her skull bone for her two prior jaw reconstructions.

Benefits:

The sound quality is much better with a surgically placed BAHA.  And right now Harlie has a difficult time being able to differentiate similar sounds (like p, b and d, for example - or block and clock, etc.).  I believe that if she could hear better, it would make a world of difference in her academics, social developments and overall self esteem and confidence.  And I think those are all really important things.

Not to mention that they also did some hearing tests on her and they said she actually could hear better on her left side (the one with no ear canal) than on the right.  I need to go over her test scores with her audiologist here locally, who has tested her many times to see if their test coincides with hers.  But they said that 20 is where you want to measure (meaning good hearing?) the higher the number the more severe the hearing loss.  She measured 40 on the left and 55 on the right.

So, if that's accurate - it seems that she would even more greatly benefit from the BAHA if that's her stronger hearing capability.

Since the surgery is outpatient (although they are going to want her to stay overnight because of her cardiac issues) it just seems like it's worth a shot to see if her skull is thick enough.

She mentioned that if we want her left ear rebuilt by a plastic surgeon in the future, then we need to know that they don't like BAHAs anywhere near the ear that's to be rebuilt.  But, from what we've learned about that - it takes many surgeries to rebuild an ear and they often don't look great - that's not even on our radar.  In fact, we are going to go with a prosthetic ear when/if that becomes an issue.  Her hearing is WAY more important than her ear's appearance.

So, I scheduled the surgery for June 18th, although I might change it to the 25th.  The last day of school is the 15th, so I might want to give her a week off before surgery.  I need to think it over.  I discussed it with Tom and he doesn't have a preference and referred it to me to decide.

I have to say that I think it's so funny that after all that fuss, I heard the info, made the decision and scheduled the surgery.  All without her Dad there.

We talked to the surgeon, left and went across the hall to be tested, then returned to schedule it with the surgeon.  When we returned, I had to check in again.  That older lady came up and asked me if the surgeon said anything about my husband not being there.  Can you believe that?!  Holy crap.  LET IT GO, LADY!

On our way home I talked to Tom about it.  He was super mad about them giving me a hard time about him not being there.

His perspective is this:  He already feels terribly guilty about the fact that he cannot attend most of her appointments, surgeries and hospital stays.  Someone judging him/us and giving me a bunch of grief about the way we have to live our life isn't helpful.  In fact, it's hurtful.  We never wanted any of this.  No child should have to go through all the crap she's had to go through.  We are doing the best we can and a little compassion could go a long way.

Okay, that's it.  I feel slightly better now.  Although I am totally going to feel way tired tomorrow (or later on today, rather) for staying up so late and writing this.  But, it makes such a difference when I can write it while the feelings and memories are fresh in my mind.  This one just had to be written tonight.

I have so much more to tell you.  But tomorrow is another day...

Thanks for reading!
~Christy

12 comments:

Ann said...

Okay, only you Christy can make me laugh sitting here in a freezing cold hospital room, so freaking tired I can barely keep my eyes open.

Mark hasn't been here for either of Jack's two surgeries this week - he's at work too. Fortunately, I don't have anyone asking me if "dad" is here.

I'm excited for Harlie to get the BAHA. Jack's nurse's daughter has a cranio-facial syndrome (she also had a trach but was eventually decannulated) and she has the BAHA. The whole concept of how it works is amazing to me.

Thanks for the update .... hang in there awesome momma!

xoxo
Ann

Grandma said...

Out of curiosity....did you tell the "older lady" that the doctor said nothing about dad not being there? OMG..you have tons of patience...I would have probably blown up..how dare they. good news..the baha will help and you and tom always makw decisions for Harlie together..one way or another! Wishing you the best of luck!

B-Mama said...

I'm so annoyed for you. Your husband is a supportive, providing, encouraging man. If Geoff had to make even half of OUR miniscule appts., NOTHING would get done. If docs had that policy, we would seem like the most dysfunctional family. And I'd like to say we're not. And neither are you all!!! SO frustrating!

I just wrote on "joy stealers" and these ladies definitely were for you. I'm sorry you had to deal with them!! Press on!

Christy said...

Ann - it makes it all worth it to know I made you laugh. Hope Jack is doing well today. And why are you freezing? Does jack need the temp lower or do they just leave it like that? xoxo

Christy said...

Grandma, yes I did tell her that it never came up. She said she was surprised. Whatever.

Ann said...

It was a combination of a cold room and the chills you get when you are stressed out ...

Susan said...

Christy I am so sorry you had to endure that. You and Tom are such great parents. Out of necessity the medical appointments have to be primarily handled by one parent. It's just the way it is when you have a medically complex kid. I'm sure they have their reasons for their policy but I really think you should let them know how you feel about the way they handled the situation. I agree with you completely that a BAHA appointment is really not that big of a deal for someone like you. The reality is that any one of the surgeries Harlie's had are equally complex. I'll be curious about the hearing difference. I can't quite understand how she can hear better from the ear without a canal. But I'm sure you'll get that figured out. You are dealing with so much that it's a wonder you don't snap sometimes. You're doing a great job. Those "ladies" have no idea. Much love.

Rene said...

You're doing amazing. I don't think I would have been as nice as you were. Hang in there! The BAHA sounds amazing and I can't wait to see well she does with it down the road.

Robin said...

Hi Christy! First, I absolutely cannot believe the hard time they gave you over Tom not being there. This is one of the easiest surgeries Harlie will go through, I promise!! When Faith had hers done at 2 yrs old (yes, my ENT didn't believe in waiting until 5 yrs old) she was in and out in a couple hours, outpatient for about 30-60 mins and then she was trying to play at home that evening!
Have you gone to see Dr. Kesser at UVA instead? Just curious because he is someone I have been planning to take Faith to, to see if she is a candidate for atresia repair and he is one of only two doctors in the country that I know is very good at that surgery. I don't know if you've considered that for Harlie, but even if you are not interested in that, I would think he is an expert in the BAHA implants as well.
Faith's ENT was very experienced and skilled with BAHA implants, he talked about hand-tightening her implants to avoid drilling too deep.
The other thing he did that I would wonder if Kesser would do, is that he did her entire implant in one stage instead of waiting 6 months for the osseofication (I think that's the term!). He would have done it in two stages if her bone seemed too thin, but once he got in there he thought it was fine to do it all in one stage. She was wearing her BAHAs on the implants about 4-5 months after the surgery was done.
Best wishes for a great outcome!!
Robin

Anonymous said...

I know that this will sound crass but I think you should get a life-sized poster of Tom, fold it up as best you can and put in in a bag that you can carry with you to the next appointment. When they ask if Dad is there say Yep and pull out the replica. What can they say. That is something that you maybe can laugh about. We think about you guys all the time and say our prayers for you. Good luck to Harlie on her surgeries. Love from Pittsburgh, Sue and Ron

Christy said...

Robin,

WOW! It's really remarkable how different some doctors think. Do you know how thick her skull was when he implanted her BAHAs? Just curious.

Anonymous said...

I'm a young girl who had the baha implant 4 months ago and have been through hell and back. Many do unfortunatley look at it as no big deal and considering what your daughter has been through this probably isn't much for her. My dad was at none of the doctor appointments or the surgery and i must say it did affect me. Work usually does get the best of us so it is understandable but encourage him to go to the activation of the baha. It will be an amazing day as for all of the little things that she could not hear she will. My mom was chewing gum when i was activated and being able to hear that was incredible and overwhelming for me. It may sound pointless to many but for the person with a hearing loss the little noises that we missed for so long end up meaning everything. Good luck to your daughter i hope all goes well and even if complications do occur the end result of finally being able to hear is the best feeling.