Tuesday, September 2, 2014

Sleep Study Results and More Brain Surgery

As we left the sleep study, the tech told us to expect results in 2-4 days.

About 3 hours after we left I got a call from the sleep study reading Dr.
"Is this Calvin's mom?"
Yes, his mother and personal secretary - this kid gets WAY more phone calls than me....
"Ummmm, Calvin had a pretttttty significant sleep study..."
No kidding? weird.

Calvin's apnea index actually went down, so now instead of being 20 times more than it should be, it's only 10 times more. Still, it's way too high.

The Pulmonologist called a little while after that and told me if Calvin had any other parents, he would be pushing for a trach. However, our combined medical backgrounds (and plethora of collected medical supplies in our home) allows us to be qualified to manage his airway and breathing on our own for now.
(Though I think it's party medical background but more being paranoid parents.)

So oxygen and continuous monitoring will continue to be the temporary fix until,
da da da daaaa,
more brain surgery!

We met with Calvin's new neurosurgeon last week (who is 2 hours away) to review the results of his MRI.
His ventricles, which were initially WAY too big - enter shunt - are now too small, or "slit". 
His neurosurgeon believes the shunt is suctioned to his brain, and so brain matter is clogging it, or something like that, I sort of stopped listening while she explained it (a. gross and b. Nate was there, I figured he was listening) and so probably the shunt is not working correctly. Hopefully that's the reason behind his apnea.

"Is there any way to tell if the shunt is working correctly besides opening up his brain and checking?"
"Nope."
"Oh. Right, makes sense. Great."
($10,000 to anyone who can invent a way to tell if a shunt is working or not without brain surgery.)

SooOOoooOOOoooOOO -
we are hoping that 
a) his shunt is not working (if)
b) there is an easy fix and
c) that's the reason he is not breathing on a regular basis

So his surgery is scheduled for early next week.
He needs a haircut anyway.

Calvin's seat while I'm on the computer.

Monday, August 25, 2014

Calvin's So Smart, He Takes Tests in His SLEEP

Imagine your child is about to take a super important test.
Like the SAT, or the MCAT, or the Bar, or even a Biology final.
Imagine you are allowed to sit and watch your child take said test.
And you know ALL the answers.
(Because you are a genius.)
But you're not allowed to tell your child the right answer.
You can only sit quietly and watch as your child reads each question and does his best.

Now imagine your child is a baby, and the results of this all-important test will determine whether your baby gets a hole in his neck, more brain surgery, or maybe some other inhumane but medically necessary intervention.

And all he has to do to get the answers right is breathe. 

Have you EVER seen a cuter baby covered in wires?
Didn't think so.


And so I sat and watched, all night.
And telepathically gave him the answers, all night long.
Breathe in, breathe out.
That's all you have to do! 
You can do it!!!
Ok, one little hiccup here, you forgot to breathe for a sec, we can get them back, you can still get an A! (maybe? I don't really know how it's scored...)

I even got all Faith Hill on him at one point...
JUUUUST BREAAAAATHE... (la la la)
(In my head of course, because the slightest of (other person's) breath can wake this sleeping beauty, and we do NOT want that, as those wires are NOT securely attached...)


8:30 pm to 5:30 am.
It was a long night.
Calvin actually slept more than he usually does at home - (maybe we should move to the sleep lab?)
Not me though - that nausea and anxiety inducing pit in my stomach that had been growing since we scheduled the test on Wednesday sprouted hair and fangs and gnawed on me all night long.
(Gross.)
(but seriously, I think I might have a new stomach ulcer.)
(minus the hair and fangs.)

Plus Calvin snores.
(Cute baby snores, of COURSE.)


Anyway, judging by the number of times he set off his alarm last night ---

(yes, I left him plugged in even though I technically didn't have to because I am that crazy mom. What if that sleep test lady takes a LUNCH BREAK just when Calvin decides to stop breathing for good? Not on my watch!)

--- I am expecting a frantic phone call from a freaked out sleep-test-grader any minute now. 
*Sigh*


He's still a little young for straight As anyway.
(Though clearly he gets an A+ in being adorable.)

Sunday, August 24, 2014

6 Months!


Half a year has gone by since this little man slid out of my belly.
(OK, actually he was pulled out of my uterus after it was sliced open, but let's not get technical...)

Not quite the 6 months I was expecting, but the end result is still a dashing little man nonetheless.

To celebrate we went out on the town, and walked around stroller free for the first time!

(on the town = exchanged size 2 diapers for size 3 diapers at Target.... someone's getting too big for his britches!)

"Gasp! YOU GUYS FORGOT MY CARRIAGE! and I think daddy is falling asleep..."

Calvin chilled in his bumbo while Nate and I hung pictures in the bathroom...

"You guys hung that shelf crooked...."

And we went for a Sunday afternoon car ride, which ended with Calvin's oxygen tank running out and us realizing we didn't have a backup....
HAPPY HALF BIRTHDAY, HAVE FUN TRYING TO BREATHE!
(Worst parents....)

Car ride!!!

Calvin celebrating by making all sorts of new sounds that I don't know how to spell and can't video tape because our phones are too full of pictures and we have a hard time deleting.

Instead here is a picture that moves and I have NO IDEA how this happened....
Magic iPhone?
Calvin = Harry Potter?
Nobody knows...



Dear Calvin,

The last 6 months have been ridiculously exciting.
Please can you be a little more boring in the next 6 months?
I promise I will love you just as much.

Love, Mom



Wednesday, August 20, 2014

Some Not So Great News on the Breathing Front

Yesterday was one of those days.
I wanted to put my head through a wall.

(Not a figure of speech - I actually envisioned my head going through the wall next to my pantry. In my envisioning, the wall splintered and exploded around my head, which wouldn't really happen because it's drywall, not wood, but it was a cool image. In the end I decided not to put my head through the wall because, 
1.) I would have to fix the wall on my own,
2.) It would really stinkin' hurt and,
3. ) I haven't completely lost it yet.)

It was a day that probably most new moms have.
The baby was fussy fussy fussy for no apparent reason, the mother was sleep deprived and hungry, the daddy was working a long, long day.

The only difference was that when this baby is fussy he stops breathing and sets off all sorts of alarms, so that's a little bit of an added stress component, but something I've gotten used to I guess.

Finally I used some magic mom power I didn't know I had and got him to sleep.

maaaaaagic....

Elated, I did some laundry, ate, pumped, brushed my teeth for like 3 seconds, and crawled into bed.

After getting up 8 or 9 times to silence the "I stopped breathing" alarm and check on Calvin, not to mention the middle of the night feeding and pumping session, that wall started looking pretty inviting again.

One time I even yelled, "Ahhh, are you freaking kidding me, I hate this, I hate this, I hate this!!!"
Luckily Nate is a deep, deep sleeper and had no idea what was going on.

I climbed back into bed and yelled into my pillow.

I'm not proud about it.
But I'm telling you...sleep deprivation can make the sanest among us a raging psychotic.
And I'm not the sanest among us to begin with.

ANYWAY...
After I had calmed down, I started reasoning with myself.

It's really not that bad, Cami.
It could be WAY way worse.

Remember when we thought he would need a g-tube and trach?
At least he doesn't have a g-tube and trach!

With that comforting thought, I fell back asleep.
Until the alarm went off again, probably 5 minutes later.

Fast forward, what, like 6 hours to Calvin's appointment with our new pediatric pulmonologist this morning.

After spending a few minutes discussing Calvin's history and current "episodes" he said,

"I never, never, NEVER say during a first appointment with a new patient that I'm worried we will need a trach and g-tube. But I'm worried we are going to need a trach and g-tube."

It's as if he looked into my brain, picked out my worst nightmare, and dangled it in front of me as a very possible reality for the next several years of my life.

We went over Calvin's last sleep study.
He told me about his AHI, apnea hypopnea index - some mathematical equation involving the number of times the kid stops breathing in an hour and some other stuff, or something like that.

He said a normal AHI is under 3.
Around 5 or 6 he starts to get worried and treats the child.
Calvin's AHI was 66.
"More than 20 times what I'm comfortable with." -Dr. Doomsday*

(*I actually REALLY like Dr. Doomsday, he is the very first Dr. to actually read Calvin's chart before meeting with us! I didn't have to give him a 20 minute synopsis on Calvin's medical history, during which I usually end up crying, so THAT was awesome. He also called Calvin cute many, many times, and told me I was "a very intelligent woman" and asked if I had a medical background. So he scored lots of points and almost made up for the fact that he had to be the one to tell me that we may need to trach Calvin.)

SOooooOOOoooOOO....
before we do anything drastic, of course we will be doing some more tests.
Another sleep study, an echocardiogram (to make sure all these episodes haven't damaged his heart - the ONE part of his body that has always been healthy!), and a swallow study. 

Which will probably bring our grand total for 'August Dr.s Appointments' up to like, 35 or something like that.

Speaking of which, immediately following that appointment, Calvin and I drove over to his orthopedic surgery appointment where (after waiting for 2.5 hours in the waiting room....2.5 hours!!!!) the ultrasound showed both hips in their rightful sockets! No more harness!

I think Heavenly Father realized that he was being really not nice to me, what with the words "trach" and "g-tube" being thrown around like that, so mercifully he made sure Calvin was SO well behaved today, throughout both appointments and the sinful wait at the orthopedic's office. 

He took great naps, and only set off his "I stopped breathing!!" alarm once or twice all day.

maaaaagic....

Just TRY to put a trach in there, Dr. Doomsday - there's not even a neck! Bwahahah!

Trying to stick his tongue out at Dr. Doomsday.

Also, a message to my family members -
sorry you have to read about today's happenings on our blog instead of a phone call, I didn't have it in me to talk to anyone today.
If it makes you feel better, Nate read about what happened on our Fetal Surgery Facebook group page.
Ooops.... I didn't think he read that.
Luckily he didn't seem angry.

Saturday, August 16, 2014

Post-op

Perhaps my last post should have been titled "Why Not to Post at 3 am the Night Before Baby's Surgery"...

Man, sleep deprivation makes everything seem 10 times worse.

Of course, I can say that now that Calvin's surgery and MRI are OVER and everything went down without a glitch.

We arrived at the Children's Hospital at 5 am after Calvin had been starving, I mean fasting for too many hours.

Clearly he was not happy.

He calmed down though, and got super cute again.

Then passed out with Daddy while we waited 2 hours for his OR time.

They wheeled him back a little after 7 am and Nate and I headed for the waiting room.
This hospital has a terrible rule that at least 1 parent has to stay in the waiting room at all times during the surgery.
All of Calvin's other surgeries and procedures, we've gone to the cafeteria and gotten food to help pass the time, but not this one.
Plus, that meant all the other kids had families waiting - I have never seen such a packed waiting room.
It must be a southern thing, but it seemed like every family was having a reunion - grandparents, aunts, uncles, cousins - people watching was pretty fun.

We waited for over 3 hours before they called us back.
Calvin had some pretty thick secretions and they were doing deep suction when we first saw him.
He looked like a train wreck - a post-op occurrence I should be used to by now, but every time it kills me.

About half an hour later, he was more awake and looking a lot better - and I got to snuggle him.

After about an hour in the PACU we moved to his room, where he conked out.

Nate worked a 24 hour shift the day before so he had the whole day of Calvin's surgery off.
Calvin was loving having Daddy around.

He slept a lot the first 24 hours post-op.

Lucky for us, Auntie Capri was visiting! 
She loved spending 2 days of her week-long visit to Tulsa in the hospital.
I was glad for the company because Nate had to go back to work Friday morning at 5.

Poor toes :-(

We were discharged around 5 pm Friday, a total of 36 hours which felt like much more.

I'm so grateful each time I get to bring my baby home.

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