Lucky #7?

Could surgery #7 be the lucky last one?  

What is it the Magic 8 Ball says – ‘Don’t count on it,’ ‘Outlook not so good,’ ‘Very doubtful’?  Well, I suppose any one of those would work.

On October 22^nd, we will be taking Gabriel to the hospital for his 7^th surgery (that’s if you include ear tube replacement to be a surgery – which I do). 

Let’s back up, shall we?  Last Wednesday we took Gabriel to the Children’s Craniofacial Clinic to meet with our Cleft Team.  If you remember correctly from my last update, we had very serious concerns with a procedure Dr. S was proposing called a Pharyngeal Flap.  We expressed that we weren't positive the rewards of the procedure currently outweigh the risks, and thankfully, our Team agreed.  We will be waiting to see if the procedure should be done in the future when we are certain it is 100% necessary.

So why are we still have surgery in October then, you ask? 

2 reasons –

Way back in one of Gabriel’s earliest surgeries, Dr. S bone grafted the opening in the left side of Gabriel’s gum line to close it using donor bone.  He was not able to graft the right side at that time because the opening there was just too big.  Instead, he filled the opening with a synthetic gel-like material and closed the tissue around it until such a time he felt the opening had come together enough to be grafted.  That time, apparently, is now.

The second reason is that darned fistula (hole) that just refuses to stay closed.  Dr. S is still not confident he can close it since he maintains that it is the biggest fistula he’s ever seen in the largest cleft he’s ever worked on.  However, I maintain that even if he can make it smaller – that’s a win.  Chad doesn't quite agree.  He thinks putting Gabriel through another surgery that results in the hole just opening up again is not a surgery worth having.

This has been a tricky situation and, for the first time, we don’t necessarily find ourselves in agreement.  I can certainly understand and respect Chad’s stance.  He doesn't want Gabriel to experience pain, have more reasons to fear hospitals and doctors, and suffer through another month of having to eat nothing but mashed up foods.  On the flip side though, my stance is that the more we do now, the less likely he will remember any of this in the future.  Plus, even if the hole opens back up, it should at least be smaller, which means we have a better chance of getting it to stay closed next time.  

The truth is – it’s never going to be the right time.  It’s never going to be OK.  Even if the fistula is successfully and finally closed this time, Gabriel’s palate is still too short.  He may still need a jaw realignment in the future.  He will likely have dental implants.  He’ll need his tubes replaced in his ears.  And he may even need a nose job and/or lip revision in the future.  We are a long way from done, and there will just never be a good time.

I was getting coffee at work the other day and talking with the barista about Gabriel (she has been following his progress since birth).  She told me that she has a baby cousin who just had his third and final cleft repair surgery.  I was extremely excited for the little fella, but found myself once again in the land of pity for my beautiful Gabriel.  

I don’t suppose I’ll ever stop hating what’s happened to him and questioning why this can’t just be over and he can live a ‘normal’ life.  But I also don’t suppose I’ll ever have answers to my questions, so I’ll just have to keep trying to destroy my hate with hope.

Until next time…

Wow - Has it really been that long???

So, I was driving today and thinking about how much I should update our blog.  After I lost said blog and then had to find it, I realized just what a horrible person I am.  I have not written a post since January?!?!?  How can that possibly be???  Things have been happening.  It's not like life suddenly got boring.  I guess, rather, the time just got away from me.  If you still care, and take the time to read this - I'm sorry.  As things are about to get interesting in our lives, I can assure you, my next post will be within one month - not eight.

I could write the world's longest update with what has happened in the past eight months, but I won't.  Instead, I'll hit the major points and promise to write more soon.  Yes, I realize I've promised this before...

In my last post, I mentioned that Gabriel would be attending a Children's Craniofacial Clinic in March.  As it turned out, we got dumped on by more snow that day and Gabriel threw up all over Chad's backseat while waiting in the drive-through at McDonald's.  So even if it wasn't for the snow, the puke definitely had us turning around and going home.  Our Clinic appointment was then rescheduled for May.

In May, with no snow and no vomit, we made it to the Clinic.  This is how things went down:

Speech is not very good (shocker...).  We were told we could increase therapy to 2 sessions a week, should he tolerate it, and keep pushing sign language as much as possible.  After discussing this with his speech therapist, we decided to not increase his sessions at this time.  Gabriel will be in speech therapy for many, many years to come, so we really do not want to burn him out and make him hate it already.

Dr. S indicated that Gabriel's soft palate is still too short.  He said he would like to do surgery in six months to a year to both lengthen the soft palate and try (again) to repair the hole in the front of the palate.  Sounds simple, right?  It's not.  Unfortunately, after 3 semi-successful repairs, Gabriel has run out of usable tissue to lengthen the palate with, which leaves Dr. S with no choice but to perform a procedure he deems his last resort.  This procedure will take tissue from the back of Gabriel's throat in the form of a flap that will be attached up to the soft palate, effectively closing off the nasal cavity from the back of the throat.  Then, two holes would be made in this flap that will allow for drainage.  This procedure is a last resort because it comes with the 'major complication' of oftentimes causing 'severe sleep apnea' since those two drainage holes will frequently become plugged.  Especially if Gabriel continues to suffer from chronic sinus infections and drainage issues.  

Chad and I have discussed this at length and, honestly, we are still not sure what to do.  On one hand, if the soft palate is not lengthened, there is a distinct possibility he may never be able to speak clearly or without sounding very nasal (think Fran Drescher - who, by the way, because rich and famous off her voice).  Plus, we can't be sure all the food that still comes out of his nose is solely from the hole, and not coming up from behind the palate, so he could always be potentially grossing people out at the dinner table.  However, on the other hand, my child could have sleep apnea - which means always worrying about whether or not he will die in his sleep.  We have talked about possibly just waiting until Gabriel is older and can decide for himself if it is worth the risk.  I don't want my baby to not be able to use his beautiful voice, but I also don't want to have him have to take his Cpap machine with him to sleepovers or have to remember to pack it when moving away to college. This is the first time we have had to make a decision in this process since the rest were no brainers and, quite frankly, it sucks.

So, what do we do?  Well, we have another Clinic to go to on September 10th where we will talk at length with his doctors about when they think the surgery should happen and when it has to happen.  Hence my update coming in a month!

In other news, we knew Gabriel's teeth were going to be a mess, but we had no idea we'd suffer from that so soon.  I took Gabriel to see his dentist about a tooth that was broken after one of his surgeries.  That appointment led to a tooth extraction and three crowns - 3 CROWNS!!!!!  Do you know how much the tooth fairy has to pay for silver teeth?!?!?!  Needless to say, my FSA has taken a big hit this year.

Additionally, Gabriel is about to age out of First Steps.  Starting in December when he turns three, he will be attending public preschool for special education children five days a week.  He will be at the same school as Ethan, so Ethan's pretty excited!  I, on the other hand, am not excited.  It's one more piece of proof my baby is growing up.

With all that I'm going to call this update done.  I have to leave my boys with Chad for a few days while I do some traveling for work, so I probably ought to get some snuggles in before I go.  I will be in touch with all of you again in September with news of the next surgery.  Until then...