We Are Home

We are home, ate lunch, and are attempting to get David to take a nap.

His throat is KILLING him.

We may need to call the doc to get better pain meds for at home.

But at least we're home.

Thanks for all the prayers. Little D still has a long road ahead of him, but he's stable and not bleeding and he's home.

(((hugs))),

chris

He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.      2 Corinthians 1:4

It Was A ...

Long night.

A very very long night.

And when I say long long I mean a looooong loooong night.

David rested comfortably in a lovely morphine-induced rest yesterday afternoon.
Last night, not so much.

Last big surgery he vomited all night, and this time he only vomited twice.
So when you say it like that, with a shot of perspective thrown in, it wasn't horrible.
Just long.

His IV hurts a lot.
His throat hurts a lot.

This morning he asked, "Mama, what's in my throat?"
So I explained that doc did surgery back there and made it shaped a little different and that's what will help him talk more clearly.
At least he's talking a bit this morning. :)

He has requested a wagon ride after breakfast, so those are our plans today. Wagon ride and eating more.
The end.

(((Hugs))),
Chris

Surgery Complete!

David came through surgery just fine. Doc said that everything went fine with the p-flap and the tongue release-thingy. David is still sleeping comfortably but when he wakes up momentarily he is in lots of pain. He is snoring LOUDLY and I guess that could be part of our new normal.

Our niece is on her ways here now (yay!) so I will post an update in the morning.

Praising God for his protection over our son!

(((Hugs))),
Chris

He's Under

David is in surgery now - we have such a brave little boy, I tell ya.

When we walked in the day surgery center, the first nurse that saw us remembered us! She asked how Ds brother is doing, and remembered that we were family of one of the nurses in a different area of the hospital... Very cool!

Our preop nurse even dressed his bear just like him :)

And we are so blessed to have such an amazing plastic surgeon. The anesthesiologist is amazing too. We had the same one for the munchkins' first surgery in 2011. He actually made David LAUGH while he was getting knocked out with the gas... You know that makes this Mama's day.

I'll keep you posted on how things go after I hear more.

(((Hugs))),
Chris

Happy Surgery Day

We are here.
Surgery day.
Ugh.

He gets the Irish from me ;-D

Jason and I feel like old pros at this now. All the feelings surrounding one of our kids having surgery  are familiar. Perhaps even...  not as intense as the first surgery. For us.

Multiply that intensity by ten thousand for the little man though.

He has been STRESSED out beyond belief. And in him that fear and anxiety looks like constant chat-chat-chattering and not sleeping and crying aLOT. We have been talking about surgery all week. Unfortunately he knows too much of what to expect when he wakes up. That's so sad.

David's one request was to have a grape scent put in his anesthesia mask. I think we have had bubble gum and maybe cherry before. So when the anesthesiologist called last night (I love the pediatric anesthesiologists that our plastic surgeon uses just wanted to share), I special requested grape scent. And he chuckled and said of course he would make sure he brought the grape just for David.

Awesome. Any little bit to help the little man.

We have two big prayers on the morning of this big surgery... We especially want David to be OK emotionally, and we want the surgery to be successful. No do-overs. No failed anythings. And with this surgery affecting the back of his throat, we want him to maintain an awesome airway after surgery.

Because airways rock.    !

One of our nieces is doing a surgical tech internship at our hospital so I may see her today :)
And one of our cousins works at the hospital. I may see her today too :)
Which is really awesome because I will take David down today by myself. And it's always nice to see a familiar face while you are at the hospital and your kid is getting sliced and diced. Trust me. It's really nice. Comforting. Like a big hug.

ETA to surgery: 5 hours

I'll be updating as we go along.

(((hugs))),
chris

Those who live in the shelter of the Most High
    will find rest in the shadow of the Almighty.
² This I declare about the Lord:
He alone is my refuge, my place of safety;
    he is my God, and I trust him.
³ For he will rescue you from every trap
    and protect you from deadly disease.
⁴ He will cover you with his feathers.
    He will shelter you with his wings.
    His faithful promises are your armor and protection.
                   Psalm 91:1-4

The Lord says, “I will rescue those who love me.
    I will protect those who trust in my name.
¹⁵ When they call on me, I will answer;
    I will be with them in trouble.
    I will rescue and honor them.
¹⁶ I will reward them with a long life
    and give them my salvation.”
                    Psalm 91:14-16

Random Pictures

David playing soccer...
When I think of where he was 2 years ago vs. now...
praise God

D playing soccer

Remember construction in the backyard last year?
Apparently the front yard was jealous of the backyard...

Sammy on Eva :)

David on Sera

Josh on no horse :)

Sammy on Sera

David finding an Easter egg at Grandma's house

The best pic we have of us at the zoo.
Really, it is.
Josh is pretending to hold up the giraffe hehe

And we are adding another two eyes to our house soon.

(((hugs))),
chris

The earth is the LORD's, and everything in it.

The world and all its people belong to him.

                         Psalm 24:1

Booger Cameras Suck

But in spite of that our poor little baby is so brave and compliant. He did amazing.

One thing I didn't realize is the camera is only in for a couple minutes. Duh of course perhaps you are thinking... or maybe that was the voice in my head after we were done. David had the camera up his nose for maybe 3 minutes.

They sprayed him with nose numbing spray, but the stinkin' 85 foot long camera tube scope still hurt.

The ENT doc and our SLPs got a really good look back in there, and little D will need the p-flap surgery. His muscles look good and his throat is not too wide so that's good news. His soft palate will need to be lengthened back. And they will clip his slightly tongue-tied tongue while they are in there.

There is 2-1/2 hours scheduled for this surgery.

God is good.

He has surrounded us with so many people who support us. Who pray for us. Who love us.

Thank you all.
We thank God for each of you.

We are loving the spring snow!

This week we are playing in the snow and worrying and obsessing about focusing on staying healthy, getting rest, eating well, eating Tums and loving on David. Because he is stressed out beyond belief. Because he has been through this, and he is hip to the surgery jive...

He knows what he will feel like when he wakes up.
Like total crap.
It breaks this Mama's heart.

Praying that this surgery on Friday will only help our son and then we can coast sans surgeries for a few years.

(((hugs))),
chris

For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me.        Jeremiah 29:11-13

Booger Camera

or you could call it a nasal endoscopy if you want to get all technical up in here.

Ya, I prefer "booger camera" too :)

David will have a scope with the booger camera on Friday. Our ENT will put a tube-like camera up into D's nose and snake it back over his soft palate, and when the camera is in place David will be asked to say certain sounds so our ENT can get some good movies of how D's soft palate is working.

Oh and yep, he's awake for all of this. I get that question a lot.

Our ENT, our speech pathologists, and our plastic surgeon will all want to see this booger camera video. Any ideas on what we should title the movie? "Boogers Gone Wild"? "BoogerHouse"? "Attack of the Killer Boogers"? "Blazing Boogers"? I guess we will have to preview it to pick the best title ;-)

BTW, this nasal endoscopy camera doodad is probably like a $500,000 piece of highly technical, specialized equipment that you need a separate degree in order to operate... ya but I still like to refer to it as "booger camera".

Next Monday we go to our most favoritest plastic surgeon for D's pre-op appointment, at which time he tells us how he wants to proceed with slicing and dicing our son. The slicing will happen on Friday.

We know David needs some sort of pharyngeal flap surgery (a p-flap as they say). This surgery should reduce his hypernasality and allow him to say more sounds properly which will increase his intelligibility. He has VPI (velopharyngeal insufficiency):

Velopharyngeal insufficiency (VPI) is a disorder resulting in the improper closing of the velopharyngeal sphincter (soft palate muscle in the mouth) during speech, allowing air to escape through the nose instead of the mouth.

During speech, the velopharyngeal sphincter must close off the nose to properly pronounce strong consonants such as "p," "b," "g," "t" and "d."

So the problem could be that his soft palate isn't long enough, or that there is an issue with the muscle in the soft palate, or that the sides of his throat are too wide. The booger camera will show what the issue is exactly, and then our team can figure out how to fix it.

*****insert Mama's full-disclosure worry moment here******
So as a parent of kids who have multiple surgeries a-happenin', I have found a pattern in my worrying-ness.

A few weeks ahead of the scheduled surgery, I start stressing about germs. (so I am deeeeeeep in this stage now) Germs and congestion and even a little coughing mean delayed surgery.

"Get your hands out of your mouth!"
"Don't touch that!"
"Wash your hands. Now! I SAID NOW!!!"
And our kids walk around smelling like hand sanitizer for a few weeks.
And I pour immune booster stuff and vitamins and Emergen-C down their throats every day.
And my head spins around occasionally and I vomit on the wall.
And Tums are Mama's happy pills.

And if you remember, last summer (at least the first half or so) sucked for us. So I realllllly don't want D's surgery delayed until summer.

And this surgery is dependent on the info from the scope, and for this scope we need the obturator to be fitting properly. So I am also worried about losing/breaking/aliensabducting/bending the obturator. Because if we don't have the scope done, we can't have surgery next week, and everything is delayed. And we had to wait for the scope in order to have the most wonderful cleft clinic SLP along for the ride... And our private SLP is coming along too (it will be like a regular PAR-TAY in the booger camera room I tell ya), and so in order to reschedule all these very most special people who knows how long that would take.

......deep abdominal breaths, Chris....in...out...in...out...

So please pray that the obturator stays in mint condition until after 3pm on Friday.
And please pray that D stays healthy until after a couple days after surgery at least.

To recap,
this Friday, booger camera
next Monday, pre-op with plastic surgeon
next Friday, D's p-flap surgery

Oh, and as usual I will be updating this blog on surgery day as we go along mostly for our family and friends who are thinking and praying for David that day.

(((hugs))),
chris

Give your burdens to the Lord,
and he will take care of you.
He will not permit the godly to slip and fall.

Psalm 55:22