He’s Back

We left the hospital late Friday morning. Finn was more irritable post-op this time around. It worried me a lot. Joey and I are working through those feelings of confusion, sadness and frustration as we face the reality that our son is not “healthy” and that his life will undoubtedly be riddled with medical trials. We are confronted with a new fear that multiple shunt revisions will cause permanent damage to his brain and alter his otherwise normal mental development.  Questions about the purpose of prayer and God’s sovereignty loom in our hearts as we navigate our own version of faith in the midst of trouble.

Thanks for praying for us when we’re not sure how.

On Saturday morning, our joyful baby Finn was back. Video to prove it:

Changing Table from Joey Armstrong on Vimeo.

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Another

Finn began showing signs of shunt malfunction when he woke up from his nap yesterday afternoon. I took him to the dr to rule out infection because his nose is really plugged. Last night he got worse and cried every two hours. He digressed much quicker this time than last time. He was hanging his head backward early this morning–the only position in which he could find relief.

I can’t begin to relay to you the misery that comes with watching your child suffer and not being able to do anything…unless you’ve been there yourself. This was the worst we’d ever seen him. He threw up on the way to the ER, went completely limp and toward the end of today he was even unresponsive when they’d pry his eyes open. They were shouting his name to keep him alert; heart rate and blood pressure all over the grid. We just watched through tears. We asked how “unresponsive” does he have to get before this is considered a true emergency? They said when he stops breathing. Have you ever waited for your child to stop breathing? Well, it’s maddening.

He is finally out of surgery. There was 100% blockage in the brain catheter. All went well…we’re just hoping this one lasts longer but the surgeon admitted it may not. That’s the nature of shunts. They malfunction.

This sad news and Finn’s uncharacteristic behavior made us realize today how much our son’s life depends on this device.

Joey’s parents came down from Tulsa to hold our hands. My parents were dying to be here too.

He’s sleeping now. Please pray for quick recovery, no subsequent infection and a much longer length of time until next revision.

Scary, hard day. Oh, and it’s Joey’s 30th birthday. Sorry, babe. We’ll celebrate another day.

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Big Sigh

Finn had eye surgery on both eyes early Monday morning. The doctor discovered that both were actually pulling in, the right more than the left. The muscle behind the eyes was too tight, so apparently he cut it…I asked him not to tell me any more details. Gives me the creeps.photo-167

We watched with tired, blurry eyes the sobering Sandy Hook shooting news coverage in the waiting room, thankful for a child who is alive. My heart has been heavy all week in the wake of such senseless evil. Joey and I discussed the reality that Satan “prowls around like a lion, looking for someone to devour.” His depravity extends far beyond simply tempting me to be selfish or worry or even smoke a cigar. He delights in death…of innocent children. Big sigh.

“Finn,” the nurse called toward us into the waiting room, snapping us out of our sadness. I’m never prepared for the recovery room. I’m just so excited to see Finn and thankful that it’s over that I forget this is often the worst part. Children are moaning and crying and parents are on edge. Even if Finn is sedated, he cries in unison with the baby behind the curtain next to us. His IV is still in, bruising his tiny forearm. It’s not a fun place. Remind me to prepare myself next time.photo-168

Aside from very bloody inner eyes, Finn is doing well. Happy as ever (this kid amazes me) and his eyes look straight. photo-169 photo-170

They can turn in again; however, so I’m not getting my hopes up. We’re told another surgery is likely, but we’ve witnessed bigger miracles. Let’s just not talk about giving him his 3x daily eye drops…trauma.

We are ready for a break. I’m sure you are too.

Pirate Finn

It’s been a buuuussssyyyyy few weeks. December is always social for us. We’ve had the privilege of catching up with Baylor and OBU buds, attending birthday parties, baby showers, Christmas parties and sharing meals with dear friends.

Finn loved Van and Raymond!

Finn loved Van and Raymond!

Finn loved Clint and Megan!

Finn loved Clint and Megan!

Finn and Navy...silly babies.

Finn and Navy…sweet, silly babies.

We’ve been to six doctor appointments already this month. Last Friday we finally made it to the eye doctor to see why Finn’s right eye has been turning in. He has perfect vision, so no glasses; but the muscle is weak. Doctor said surgery is inevitable but we could try patching the good eye to make the weak one stronger. Only two hours daily, but the adhesive has left a pink ring around Finn’s baby blues. Boo. Joey and I actually decided to just get the surgery over with. We’ve far surpassed our deductible for the year, so we made the decision not to drag our feet and get it done before the end of 2012. It’s scheduled for Monday morning.

photo-158It makes me terribly sad that on Tuesday of next week, my sweet little pirate will have had five major surgeries in nine months of life.

Not fair. Not fun.

Waiting for ultrasound...

Waiting for ultrasound…

Today while I was waiting with Finn on my lap for his urology appointment, I watched several parents struggle to control their children..severely handicapped children. I observed at least six with severe mental/behavioral disabilities. One teenager even shoved her grandpa against the window because she didn’t want to enter the elevator. My eyes welled with tears…I was embarrassed to be crying in such a public place, so I did all I could not to let my tears drop to the vinyl seat beneath me. I looked down at Finn, playing with teething keys and was humbled by how “normal” he is. I quickly shut the door on my pity party and praised Jesus for Finn’s healthy mind.

photo-163Think of Finn as he recovers from an eye surgery over the Christmas break (it’s out-patient and shouldn’t be too invasive). Also pray that we only need one. Many times it requires multiple surgeries.

All Better

I can hear my mom saying this phrase to my seven year old self, knees skinned from falling off my bike. Big Bird band-aids and mommy’s kisses make it “all better.”

In Finn’s case, however, it took a couple neurosurgeons and a day of recovery in the hospital to remedy his boo-boos. Apparently Finn’s shunt was malfunctioning for about a month (we’re guessing), but finally broke/malfunctioned on Saturday.

He had an episode (hanging his head back at a 90 degree angle and screaming if we’d move it, eyes couldn’t focus, and going limp) that morning that he never really recovered from. Once we got to the ER Finn’s shunt turned bright red. I guess the CT he had the week before showed no malfunction because it hadn’t completely broken yet. I’m so thankful we listened to our gut and went back to the ER.

Finn is a million times better! We haven’t seen this Finn in over a month. He’s content, happy, energetic and observant. I can’t imagine how fussy I’d be if my head felt like it was going to explode under pressure most hours of the day. Poor little man!

Nana and Papa Armstrong surprised us with a visit!

Finn will have a follow up with our neurosurgeon in a couple weeks. We plan to head to San Antonio for Thanksgiving as long as he continues to feel well. Thank you for all your prayers, messages, texts, food, and cupcakes. 🙂  God is so good.

Recovery

The surgeons found the malfunction in the brain valve part of the shunt…the least complicated and invasive of options. Praise God! The incision looks very big to us, however. He’s on lots of pain meds, no food and only clear liquids. He’s uncomfortable but we’ve seen a couple smiles. He’s also peeing well! Hoping to sleep in our own bed tonight.

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OR

After several red flags this morning and many sporadic ones over the past several weeks, we are finally at Children’s with Finn waiting for the OR. Emergency shunt revision necessary due to enlarged ventricles in CT scan this afternoon.

We were headed into surgery around 8:00 but neurosurgeons were called away to another hospital for apparently something more urgent. Still waiting for our hungry, exhausted, uncomfortable Finn to be rolled into surgery for some relief.

Pray the surgeons are skilled (it won’t be our own).
Pray they find the malfunction quickly so surgery is less invasive.
Pray Finn recovers well.
Pray his bladder does not become paralyzed from anesthesia like it did during circumcision surgery.
It’d be nice to head down to SA for Thanksgiving like we’d all planned. Much needed family time with the Rosells.
Pray we are discerning and calm advocates for our son.
Amen.

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