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.