You may not believe me when I say this, but I have very
valid reasons for not updating our blog right away after Gabriel’s most recent
surgery.
Reason #1 – I wanted to be sure I had good news to share…and
I do! The hole is still closed!!!!!!!!
The repair turned out to be much more difficult than anyone
expected. Our brilliant surgeon had to
do a triple layer repair. The first
layer was in the nasal cavity where there was not much tissue to work with, so
he used a synthetic material to add to the existing tissue in order to close
the hole from the nasal side. He then
put in a layer of bone grafting, using donor bone – again, thank you to the
organ/bone donors of the world. The last layer was in the oral cavity. There was enough tissue there without having
to use anything synthetic, but not enough that the tissue wouldn't be pulled
tight, making a possible opening in the future a known risk.
The surgery took about six hours and recovery was extremely
difficult this time. Gabriel was on a
liquid/non-chew foods diet for two weeks and would barely eat or drink anything. He also kept running fevers non-stop. Not high enough to warrant possible
hospitalization from infection, but enough to cause him discomfort and
ridiculous amounts of crabbiness!! Weeks
three and four were spent eating easy-to-chew foods and things were getting
better.
Now, we are back to a regular diet with the exception of
anything on a stick. Halloween was
interesting when we had to keep telling him what things he could not eat, but
he has certainly made up for it by eating his weight in M&M’s since! We expect that as of this Monday, we will be
completely back to normal and on a 6 week break from seeing our surgeon!
In the meantime, we are still seeing some food come out of his nose, despite the hole being closed. This brings me to...
Reason #2 – I don’t know where to begin with this one.
Dr. S confirmed in this last surgery, that indeed, the soft
palate is too short and we have no choice but to perform the Pharyngeal Flap
procedure. Well, we do have a
choice. We could opt to not do it at all
and leave Gabriel ‘as is’.
What does that mean?
Let’s review what we already know. Gabriel’s speech is ‘unintelligible’ – which,
by the way, is a term I hate.
Unintelligible, to me, is too close to unintelligent – which he most
certainly is not. What he is - is very
hard to understand. In fact, if you didn't live with him, you probably wouldn't ever figure out what he’s trying to
say. With two years of speech therapy behind us, we
have not really seen any improvement in his speech.
When making certain sounds, such as ‘b’ or ‘p’, the soft
palate has to close off the nasal cavity.
With Gabriel’s soft palate being too short, this closing off is not
possible. I have asked for our doctors to
perform a nasendoscopy to see just how short and far off from closure the soft palate really
is. In a nasendoscopy, a scope is put
in the child’s nose and the child is asked to make certain sounds in order to
see what the palate is doing. The hope
is that if the soft palate is close to closing off the nasal cavity, then perhaps
through growth and intense speech therapy, Gabriel’s speech can become
intelligible.
However, the alternative is that the soft palate is nowhere
near close. We have been told by two
speech therapists that if that is the case, all the speech therapy in the world
will never help and we are better off bringing someone in to teach us sign
language. Since Gabriel is currently
terrified of all doctors and has just been through quite a lot with his last
surgery, we are going to give him a few months before we do the
nasendoscopy.
So, what if the soft palate is just too short?
Here’s where things get tough. I've mentioned the risks associated with the
Pharyngeal Flap procedure in a prior post.
Aside from the complication of not surviving the surgery, Gabriel would
have a huge risk of having to live with severe obstructive sleep apnea for the
rest of his life. Additionally, in order
to give him the best chance at improved speech prior to going to school, Dr. S
would want to perform this procedure in 2015 – next year.
As you can imagine, Chad and I are as lost as two parents
can get right now.
On one hand, I went to my niece’s choir concert recently and
sat there falling into this complete sadness knowing that my Gabriel will never
be able to sing with a choir if we don’t do this procedure. He loves to sing – but unless you can pick up
on the tune, you don’t know what song it is.
He will likely be alienated and not have friends because he can’t
speak. Of course, having the procedure doesn't guarantee his speech will be perfect either.
On the other hand, am I signing my child’s death certificate
if we go through with the procedure? I’m
not trying to be dramatic, but that’s how this feels. Our doctor has known of children who did not
survive this operation. Our ENT says
that if Gabriel ends up with severe sleep apnea because of this procedure, his
hands are tied and there is nothing he can do to help.
This is truly a decision that one way or the other will
impact the rest of his entire life.
How do we make that decision for him?
Right now, I hate the naïve me who seriously thought everything would
be ‘fixed’ with Gabriel before he was one and he’d never know about his
condition until we chose to tell him.
How stupid could I have been? And
how many times does my child have to pay for whatever sins I committed? Why, for once, can’t he just be a ‘normal’
kid with normal kid problems?
I could go on all day.
Instead, on this, the eve of Thanksgiving, I will leave you with
these thoughts –
I am so thankful that Gabriel is so strong and tough and able to endure the challenges laid before him. I am so thankful for the doctors and therapists who really seem to care about our baby and what his future looks like. I am so thankful for my husband who, though we don’t always agree, puts me in my place when I start to spiral out of control with worry and obsession over all of this. He is the half full to my damn near empty. And I am thankful for all of you who provide me with an uncensored voice and at least the pretense that someone out there is listening.
