Tuesday, February 25, 2014

Ever Consider Adopting A Child with Craniofacial Issues? Or, If Not, Maybe Pass this Info On?

If any of you have been caught up in Lukasz' charm and been inspired or if you have always thought about adopting a child with a craniofacial differences and/or hearing issues, here is a child you may want to consider;  Bode.  The agency that advocated for Lukasz and found us is now advocating for Bode. I wish we could adopt him but as my husband says "no more room in the car".  So, I will advocate instead.

But, first, "Advocate" is Not the Right Word

Everyone talks about "adovcating" for a child but I really don't think that is the correct word. "To advocate" means "to speak or write in favor of; support or urge by argument; recommend publicly".  I don't believe that is what any of us are doing. When we tell people about a particular child who has been passed over for adoption for any reason we are not arguing for them or recommending them because none of us would say "this child will fit in your family" or argue a family into adoption. Nor would we say that this child is right for every family. Every individual and family must decide for themselves whether adoption and any particular child is right for them.

Really, I think we are just spreading the word about these children.  Trying to let a broader audience know that this child is still waiting so that his/her family (the right one for him; the one that can handle and love his issues) will hear about him/her.  And when that family hears about him or her; sees that face for the first time, they will start a journey of consideration that will ultimately lead to him coming home; being claimed by the ones who belong to him.

If you know Bode is not the child for you, then pass on his information so more people will hear about him and he will get closer to his family finding him.  And spread the word about any waiting child.  It may be your voice that leads a family to their child.

So, here is the info on Bode (pass it on):


Bode is in Bulgaria and just turned two.  He has hearing loss and craniofacial differences (just like Lukasz, he got both) but is reportedly on track developmentally with his peers. It looks like a particular craniofacial syndrome that I ran across while researching Lukasz' issues, but I am not a doctor so won't guess. However, that syndrome wouldn't make me hesitate to adopt this guy if our car had more seats. Below is a video of him.  It appears he has both eyes so he's a little ahead of Lukasz in that respect and he sure looks like he has the same spunk.

If you or someone you know might be interested, email me; I'll get you to the people with more information. And I am always willing to answer any questions anyone may have about living with/managing craniofacial differences and/or adoption.  Plus, I am always open to conversations with adults. :-)

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Saturday, February 22, 2014

More About Our Surgeon

Because I know how hard it is to decide on any surgeon or physician for my children and even more so on a surgeon who will be performing major craniofacial surgery, perhaps throughout my child's life, I feel it is important to offer my experiences and opinions for the benefit of other parents searching for the right surgeon.

My husband and I are driven to deep research and analytical examination in everything we do. Trust me when I say that he and I exhaustively researched physicians and it was still hard to come to a final choice.  While there are not a lot of surgeons experienced enough to handle a case like our son's, there are several very good ones.  However, we were sure we had chosen the correct doctor once we met with Dr. Kane.  But I will warn you that even if you believe you have chosen the correct doctor, it still feels like jumping off a cliff when your child is wheeled back into surgery.  You hope and pray that you have "chosen wisely" in the one aspect of your child's care that you really have any control over.  Anything can happen in a surgery under general anasthesia no matter who your surgeon is; you can only hope that that one ultimate choice you made, the doctor, is the best you could make with the information available.

For us, it turned out that we could not have chosen better. All the trips, consultations, scans and the unexpectedly long journey to this surgery, appears to have worked together to bring us to the right place. So far, Dr. Alex Kane and his Craniofacial team at Children's Medical Center Dallas fulfilled every expectation that we could have asked for in the care of any of our children. We were impressed by their personal interest in Lukasz' care.  They all seem to be genuine, good, approachable people with whom we felt welcome to discuss any issues or concerns.  Our family would recommend them to anyone seeking a craniofacial surgeon to treat their child from a minor issue up to, and including, more complicated and serious cases.  Lukasz' case is pretty involved.  If Dr. Kane can handle him, it's likely he can handle your child's issues as well.

Here is a 2011 Youtube video I found introducing Dr. Kane (starting at 3:42).  It also shows how the craniofacial team works, as well as following a child with a clift lip through treatment.  The video also follows the care of a patient in another specialty, so you'll have to keep watching to see all of the information about Dr. Kane and his team.




On the Other Side of Surgery

Matching hairdos post surgery. Still super cute (both of them!).

Lukasz did GREAT!  Well, I guess I should give the credit to his surgeon, Dr. Alex Kane, and his team.  They did a wonderful job and we could not have felt more comfortable during the entire experience.  The actual work time during the surgery was about 6.5 hours.  Someone called us with an update every hour and we met up with Lukasz in the ICU as soon as he came out.
Immediately after surgery in the ICU.
Masks/gowns/gloves until cultures came back.
Incision. Zigzag so when hair gets wet it doesn't
have an obvious horizontal part.


















We were told repeatedly that he would have the wind knocked out of his sails for a week or two but Lukasz surprised everyone by waking up at 4:00 a.m. the evening after his surgery and acting his usual feisty self.  We had the hardest time keeping him in bed and from trying to pull his IVs out. He ate and drank very well right away. Dr. Kane told us to expect his head to swell to the size of a pumpkin and his good eye to swell shut, but, again, Lukasz defied all.  He did develop quite a bit of swelling (who wouldn't expect that?) but his eye never swelled shut.  And the swelling certainly didn't bother him.  He did so well, in fact, that we were allowed to come home on Sunday.  A full 3 days earlier than we expected.  I don't know how he could be so energetic and running around after such a major surgery--on his head!
By the next morning, you can see the swelling.
Here he is signing "Get in car, go home, see
grandma." We had just talked to her
 on the phone.

Sleeping.  You can see that this is the next day;
no swelling yet. Grandma made the Superman
blanket special for his hospital stay. We also had
a beautiful quilt made by a friend just for him.




















Now, it is just a matter of medications and monitoring the incision.  He has had a little bit of a fever but we were told that with cranial surgeries, children usually develop a little fever a few days afterwards.  It has not kept him down and the ibuprofen usually takes the fever down. We have been in contact with the doctors and it has not been of any real concern. We will see Dr. Kane in three weeks for a follow up. In the meantime, we send photos of Lukasz' head to Dr. Kane every three days.
Watching "Pooh Bear" on the Nook.
And see the beautiful quilt?
Finally, free! Sort of.  Mini-adventure to the AMAZING train
display in Children's Medical Center. We went twice.
The 1st time, Daddy let him pull the wagon but Mommy
was more rigid about  the rules and made him ride.

















We were also very lucky to have the Ronald McDonald House Dallas as a home base.  We weren't there much but it was wonderful to have a place for one of us to sleep while the other was with Lukasz.  And they had 3 home cooked meals a day provided by volunteer groups, as well as special events and plenty of things for children and there siblings to do.  If we had brought any of the other kids, they would have loved the RMHD.  All for $15/day.  If you are going to be overnight for your child's care, find out if there is a RMH and ask your doctor's office to send a referral (our office has a social worker that does this). We hated to pay for 6 nights (what we were initially expecting) in a regular hotel when we would just be there minimally and the RMH gave us much more than a bed--support in a happy atmosphere.  Nothing can substitute for a place familiar with and specializing in families caring for children undergoing stressful medical care.

My little Valentine. Dinner, the night before surgery.
One of the volunteers gave him the heart ears.
Can you tell he was pleased with himself?
The horse in front of the RHMD.

Wednesday, February 5, 2014

The Big Surgery is Approaching




It’s been a long time since the last post.  We’ve changed doctors, Lukasz has grown, his speech is getting better, his signing is even better than that and we have just been living our crazy life.  But there are big things in store for the littlest Kane in the next few weeks and months. Cranial surgery, a possible BAHA, and starting school.  Here is a quick overview of what will be happening over the next few weeks.

One week from today, Lukasz and I will be driving to Dallas for his post-laryngomalacia, adenoidectomy and ear tube surgery appointment and his pre-op appointment for his long awaited cranial vault surgery on February 13.  We are not superstitious people but I have always taken the “never hurts to be careful” attitude, so having this surgery on a “13” still makes me nervous.

Long Time Coming

Anyone who has followed this blog or knows me in person, might be surprised to learn that we changed surgeons.  We were fully expecting to use Dr. Fearon.  We have heard only good things about his skill.  However, he is on no insurance plan.  Our insurance is very good and we do have significant out of network coverage (comparatively speaking, that is) but we could not get our insurance company to give us even a general estimate of what our out-of-pocket expenses would be.  Nor did we get much help from the Dr.’s office.  They wanted to help but for some reason they could never give us all of the necessary billing codes to pass on to the insurance company and they repeatedly told us something along “that everything typically works itself out” after the surgery.  With a $70-150,000 surgery, we really need to know what our costs will be.  We have 5 children and this is not the only surgery Lukasz will need over the course of his childhood.

In addition to the billing issues, we only ever saw Dr. Fearon.  There was no feeling of having an entire, coordinated craniofacial team working with us for a long-term treatment plan for Lukasz.  Everything was piece meal; we saw random specialists in OKC suggested by one different doctor ater another and they would send us to others and none worked with Dr. Fearon for a cohesive plan. I knew we were missing something, it didn’t feel right that I had to explain to each successive specialist what exactly the other specialists were doing or suggesting and then he/she had to try to independently base his/her treatment on what I told them the other physicians were doing/planning.  At least, that’s what if felt like.  Plus, every family who has a child like Lukasz with whom I have connected has discussed their coordinated “team” and that they would often see the members of their team in the same place at the same time and, therefore, they had an idea of what surgeries would be necessary and at what time down the road from the particular physician who specializes in that treatment.

Even with the lack of a team feeling, we liked Dr. Fearon and would likely have stayed with him had we not had so many issues with finding out what this first surgery with him would actually cost us. With no idea what our costs would be, I went back to researching craniofacial surgeons and teams.  However, it was my husband who located and found Dr. Alex Kane (no relation) at UT Southwestern/Children’s Medical Center in Dallas.  He was listed on several of the associations that recommend craniofacial teams.

My husband emailed Dr. Kane photos of Lukasz and discussed his issues.  We quickly had an appointment with a neurosurgeon and a consultation appointment scheduled.  I drove down with Lukasz for what I thought would be a short consultation appointment.  The end result was that we really like Dr. Kane and feel very comfortable with him.

A Craniofacial Team

We met with the neurosurgeon the day before the consultation with Dr. Kane.  He informed us that he did not see signs of intracranial pressure and that while we should do an cranial vault surgery to give Lukasz’ brain room to grow and prevent any pressure, we should not feel like it needed to be done immediately.  This confirmed other opinions we had received from other cranial surgeons but we had never spoken to a neurosurgeon (whose business is the brain).  We were relieved because one cranial surgeon had mad us feel as if surgery needed to happen immediately. 

The next day we went to see Dr. Kane. However, when we checked in, I was informed that we were there for a team appointment.  Pleasant surprise.  One after another group of physicians from several different fields came in to examine Lukasz.  There was even a psychologist to discuss any existing and possible psychological issues he might experience due to his appearance.  Only the opthamalogical surgeon and the otolarynologist were unavailable.

Dr. Kane had printed a 3D model of Lukasz’ skull from his CT Scan.  After meeting with all of the doctors, Dr. Kane came in again and we conference called my husband.  We discussed plans for surgery and what his future treatment might look like.  He wanted us to have appointments with the ear nose and throat doctor and opthamologist to assess the existing sleep apnea and hearing issues and to assess whether an eye prosthetic would be possible (not of vital concern to us) before we scheduled cranial surgery.

Appointments with Dr. Mitchell, the ear nose and throat doctor, resulted in another sleep study, a throat scope in the office and eventually, laryngealmalcia, adenoid and ear tube surgery.  The opthamologist concluded that surgery to create an orbit and functioning eyelid would not be possible and therefore an eye prosthesis globe would not be possible.  He said one of the options would be a prosthesis that rests on the face with an eye and lid painted on.  The eye would not blink.  When Lukasz is older he can decide on that, but for us we think an eye patch would look better (and be much cooler) than an painted on eye that doesn’t blink.

The Big One

After the surgery on his larynx, etc., we had another appointment with Dr. Kane. The original plan was to do cuts in the skull and install distraction tools to reshape the head.  I would have to turn a screw every day for 6 weeks and then he would continue to wear the device for another 6 weeks.  All while trying to keep my VERY “full of life” boys from wrestling, rolling around and otherwise roughhousing.

However, after continued thoughts and consideration by Dr. Kane, it was recently decided that we pursue a more traditional cranial vault surgery in which the skull is cut into pieces and moved and then thin cuts from other parts of the skull are put in the open spaces that are created along with some dissolving plates.  At least, this is my lay understanding of what will happen.  I trust Dr. Kane and his team know what they are doing.  The surgery can take from 5 to 10 hours or more which does not include the preparation/going under anesthesia time and post-op wake-up/recovery time.  So, a good, full day of worry for Mommy and Daddy and hard, stressful work for the surgeons.

Here is what the cuts will look like:



Yes, his tiny, little right cheek bone will be moved forward, too.

If everything goes perfectly, Lukasz will be in the hospital for 5-7 days.  Until our conference call with Dr. Kane last Friday, I was worried but not overly upset by what Lukasz will have to go through.  I mean, I don’t want him to be in pain but this is necessary.  So, I would feel bad for his pain but not too upset about the situation that he must endure it.  Until Dr. Kane told us that he will look normal after the surgery for the first day, then his head will swell to the size of a pumpkin and his eye will be swollen shut. f everything goes allright, it will start to come down after three days.  And another 2 or 3 daysuntil he can see.  Because he only has one eye, he will stay in the hospital until he has most of his vision back. 

I just assumed he’d look like himself the whole time; that he would wake up like he did from his other surgeries and just be in the hospital for 5-7 days so his head could “set,” for lack of a better term--playing on the ipad, watching tv, and coloring. I didn’t imagine having to see him looking like that and unable to see his mommy and daddy or color or watch tv.