Virginia Trip News February 19, 2010

The Virginia trip brought information to us that we needed, whether it was information we wanted to hear or not. Damn it anyway when you have to be the bearer, a job I emphatically hate. I would make a terrible town crier. It takes me way too long to digest unexpected things. This is a wealth of information and putting it in simplest form was by no means easy.
Our family was anticipating Virginia's trip to be the beginning of the journey for Jake that would plan out a path of corrective surgery and ultimately leave him healthy and out of danger from infection. I expected much more. I expected to come home and be able to say "this is what is going to fix things" We instead are left to move to acceptance and just say this is what we're going to do.
Here are the facts:
The ear canal that Jake has is by no means sufficient for normal hearing or normal function. It is in fact this partially formed narrow ear canal that has been the root of the many health problems that Jake has had. Since it is not wide enough to perform and shed like a normally formed ear canal, the build up of shedding skin that would leave the body through the ear canal just collected in the narrow canal and formed this mass called a cholesteatoma. When it was removed it was larger than 14mm. It eroded his ear canal bone, but thankfully left his cochlea intact. The other grim information from the surgery report leaves us very thankful to have a healthy boy now.
We came home needing to make a definitive choice on what we hope will be the lesser of two evils.
The surgery uncovered that this ear canal did indeed have an eardrum and both the ear canal and eardrum were left intact. Leaving this poorly formed and insufficient ear canal there ultimately means that the cholesteatoma that formed is likely to grow again. The next fact that affects the decision making is that Jake has chronic ear infections due to eustation tube dysfunction. This simply stated means that if he had a normally formed ear canal, like his brothers, he too would have tubes in his ears to help him outgrow this chronic ear infection problem. Since he has no ear canal and no way to place a tube to help with the drainage of infected fluid, it just collects nicely in his head.
Jake’s surgeon had to decide the lesser of two evils when he performed the surgery. Should he remove this insufficient canal and eardrum that caused these problems and just close off the ear cavity, or leave it there and address only the infection. He did what was best for Jake at the time and removed the infection, and the mass in hopes of a canalplasty surgery in the near future.
All of these facts brought us to seek a second opinion by a man who specializes in ear canal reconstruction. His opinion is that Jake has many factors that make him a complex patient:
1. He needs to recover from the surgery.
2. He needs to remain infection free to allow the infected area to heal completely before any other surgery is considered.
3. He needs to outgrow the eustation tube dysfunction problem. This middle ear infection problem leaves his middle ear packed with fluid which will make any surgery attempt unsuccessful.
4. Jake’s fear of doctors is a huge factor. We are dedicated to making doctors the “good guys” in his eyes and he has already come a long way. After care for this type of surgery is extremely vital to it’s success and he needs to be tolerable of the doctors that need to give this care. Right now he runs screaming in the opposite direction of anyone with a white coat or stethoscope.
Until these issues are resolved Jake is not a candidate for a canalplasty (ear canal reconstruction) on his left side where he had to have the emergency mastoidectomy surgery.
This was devastating news to us, because in order for him to stay healthy that ear canal needs to be open for proper drainage. Since the initial surgery that we thought would solve the health problems is not an option now we still are brought back to choosing the lesser of 2 evils to get him healthfully through until he is a good candidate for the surgery.
1. Initiate a second surgery to remove the ear canal tissue and eardrum to prevent a cholesteatoma from coming back. Doing this will also leave an even larger empty pocket in the area where a normal ear canal would be, where fluid can collect and store from a middle ear infection. This will also mean reopening a recent surgery site and forcing him to heal yet again.
2. Wait and do nothing for 6 months, then get a CT scan in the hopes that we see that the inner ear area is fluid free and healing without complications. This means that we take things 6 months at a time and pray that the cholesteatoma doesn’t grow back before he outgrows the ear infection problem and is ready for the canalplasty surgery. This may be in a year, or in two or three years, we just won’t know until we get there.
What would you do? We have cried, and prayed, and cried some more. Here ya go folks! Two ticking time bombs for you. Which one do you think you have more time with. Choose that one.
We are choosing #2. Jake has been in God’s hands since he was given to us and that’s where he will stay. We will wait out the 6 months from the date of surgery. That will bring us to just about the end of May. We pray that the CT results will show us nice healing and a healthy middle and inner ear with no infection.
When we get this CT scan completed, we will also be seeking the third opinion of a specialist in the same field. The two opinions that we received thus far contrasted so greatly in so many ways that we would really like to see 2 specialists agree on what they think is best for Jake or at least not be so grossly different that we are left up in arms. One surgeon aggressively told us that Jake should have his canal reconstructed this April, the other told us to put the brakes on, allow time for healing and be cautious as our son is a complicated patient and time is our best ally.
Along with this huge cloud of uncertainty we were also greeted with irony in it’s most pure form. Jake does have a good ear and is an excellent candidate for canalplasty. What’s the irony you may ask? The good ear is the right ear where there is, in fact, no outer ear. If your belly did a flutter of excitement, be excited! We are very excited but first things first. We need this little guy to stay healthy and that means the “bad” side has to be addressed first.
We brought home a very vibrant and happy little boy from the hospital last November and he has proven to us what a deficit his constant infection and pain was in the past. He has gained 4 pounds since he is home. That’s more than he has gained in almost 2 years and we are thrilled to have an infection and pain free little terrible 3 running around, instigating all three of his older brothers on a daily basis.
Jake is on his third set of antibiotics since his surgery in November and continues to constantly battle sinus infection, which just complicates the ear infection factor. We look forward to May when we can have his CT scan completed and hope to keep his ears dry on the inside until then for some nice healing.
I thank all of you in our family whether it be the friend family or the family family for your patience with us in trying to find the best way to explain all of this complicated news. This newest fork in the road just shows me that we can’t anticipate the next move. This is very difficult as I do best in a well informed world.
In closing, this is what we’re going to do! We will see you all on the path of our journey just a little farther up the road! Thanks for the prayers, love and all of the positive reinforcement. We could never survive without those key factors. Peace.