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.

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…