Finally something to talk about

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.  

Pre-surgery Preparations

Tonight we are in the middle of our pre-surgery preparations in the Hillegass house.  As such, I thought we'd do something a little different and share some pics of how pre-surgery preparation goes.

First thing I do is take our pantry from this...

To this:

Why, you ask?  Following Gabriel's 7th surgery tomorrow, he will be on a very restricted diet.  For the first 2 weeks, he will not be allowed to chew anything.  Weeks 3 and 4 will be food that can be easily chewed (think mac & cheese).  Week 5 should be back to normal.

So now we have the largest amount of mashed potatoes, applesauce, pudding, yogurt, and ice cream.  We learned the hard way following the last surgery that if we don't hide the things he likes to eat, there is a tremendous amount of drama when we have to keep saying no.  Therefore, the pantry only contains Gabriel's diet approved foods.

And where did all the goodies go?

To the laundry room - of course!!  This is what the cabinet above my dryer looks like tonight.



In support of Gabriel's restrictive diet, I will be going on a 5-day juice detox starting Friday.  I figure I will not chew with him and be able to make extra juice to see if I can get some nutrients into him - since there is not much nutrition in a pudding cup.

Here's my new juicer.  I'm pretty excited!  Chad thinks I'm nuts.  

The last picture is the contents of our overnight bag for the hospital.  Luckily, we only live about 25 minutes from the hospital, so if we forget anything, it's not a long drive to come back.  

The contents of our bag include: a couple pairs of clothes (nothing that has to go over Gabriel's head since he will likely be swollen and sore), his blankie, his little furry friend, a puzzle for me, some puzzles for Gabriel, a Kindle for me (he's still using Chad's right now, so it's not packed yet), some chargers, some meds, and some diapers.  Yes, the hospital provides diapers and I suggest that if you are unfortunate enough to ever have a child in the hospital that you use their diapers and take any leftovers with you - because you WILL pay for them.  I have found, however, that sometimes the hospital is not prepared with diapers in Gabriel's size, so these are really just to be used in the event that happens again.

As for the rest of our preparations, we are just spending time with Gabriel and trying not to think about what happens in the morning.  Chad and I haven't slept well in the past week - which happens before every surgery.  It's amazing how it never gets any easier.  It worries me, and upsets me just as much now as it did when Gabriel was 7 weeks old going into his very first surgery.

At any rate - we will be up and heading to the hospital at 6:30 in the morning.  Surgery is scheduled for 9 am and should take approximately 3 hours.  Following surgery, we will be staying in the hospital for at least one night.  One very long night.  I can't wait until tomorrow is behind us and we are moving forward again.

So now...deep breath.

Hold...count to 10...

Exhale.

Ok.  

We're good.

Let's do this thing.