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.

Wednesday, August 13, 2014

More Surgery


In a few hours Calvin will be undergoing yet another surgery.
The hernias he had repaired in the NICU when he was 3 weeks old re-herniated.
A side effect of the shunt, they suppose-
extra fluid from his brain now drains into his abdominal cavity and pushes things every which way.

Immediately following his surgery, he will head to Radiology and have an MRI of his head and spine while still under general anesthesia.

He will be gone for several hours, probably the longest I'll have been away from him ever.

One year ago, we were 8 weeks' pregnant. 
Nate and I were still closely guarding our precious secret and we had just seen his little heartbeat for the first time.
We were so excited about our little miracle, dreaming of his arrival, planning his future.

If someone had told me that in one year I would be getting ready for my baby's 5th surgery I think I might have thrown up and/or fainted.

But I also think I would have supposed that by surgery #5, things would get easier.

Let me tell you.... it's not easier.

In the beginning, things are crazy.
There is so much to learn, so many questions to ask, so many tears to cry, so many people to call.
Everything seems so urgent, and you run off adrenaline.
The only thing that matters, the only you can think about is your little baby.

But that can only last so long -

It's only a matter of time before the neat stack of medical bills on your desk becomes the sea of bills that covers your desk, with no relief in sight...
before your adrenaline runs out and you realize you haven't slept more than 2 hours at a time in months and months...
before your clothes stop fitting because you've been eating at and sitting in a hospital for months and months...

And your little baby who you loved SO much when all he did was eat and sleep-
well, you've gotten to know him a lot better now...
You know exactly how much he loves to eat, and the tricks that (sometimes) work to get him to sleep, and that now he loves nap time but loathes bed time -
you know that pretending to sneeze will throw him into a fit of giggles every time -
you know how to calm him down when he gets riled up, how to cheer him up when he's sad -
you know his favorite book is the one with all the pictures of his daddy, though the one with the trains and tunnels is a close 2nd - and he'll sit so still and stare at the pages in wonder each time you read them to him -
you know his favorite song is No More Monkeys, though sometimes he prefers Apples and Bananas-
you know how to hold him just so, so that he fits perfectly in your arms, and not really anyone else's.

You know all those things about him, you know how much he needs you and he trusts you -
but you have to hold him all night and not let him eat even though you know it's what he wants.
You have to wake him up in the middle of the night, even though you know he needs to sleep, and drive him to the hospital where he will be poked and prodded, and you know he will hate it, and you know he's going to cry so hard that he will turn blue and pass out and you know the nurses are going to freak.

And then you have to hand him over to someone he doesn't know, who's arms don't fit him, and watch them take him away.
You know he will lay unconscious on the operating table, in a room full of people who don't know him, and don't love him. They will breathe for him and cut him open, and then they will close him again.

And they will fix him.
You know it's what's best for him, you know it's what he needs.

But it's not easier, it might even be harder than the first, the second, the third, the fourth...

I keep waiting for things to get easier.
Maybe tomorrow.


Tuesday, April 29, 2014

Smiling and Swallowing

Why is Calvin so happy?


Because he (finally) passed his swallow test and now we can get that awful tube out of his nose!


And go home soon!!!


"WHAT?! This isn't my home???"

I can see why you would be confused, dear Calvin.
You have lived here in the PICU longer than you've lived in your home.
You have also spent more time in the NICU than you have in your home.
In your 9 weeks of life, nearly 7 have been in a hospital crib instead of your own crib.

BUT, that should be over soon!
We hope to be discharged tomorrow or the next day.
As soon as it is clear Calvin is gaining weight, and the neurologist signs off, we are good to go!

We wont miss the hospital, but we will desperately miss this:

(proof in numbers that Calvin is breathing, alive and well.)
(We stare at it all day and all night.)

Supposedly you're supposed to stay away from commercial products that claim to 
"reduce the risk of SIDS."
Like the Angel Monitor, Snuza, etc.
(All the baby apps say so.)

So we just decided to go with what they use in the ICU.
 We found one just like this on eBay.
It should be arriving soon.

Just so Calvin can feel at home, you know?
(It would be way too dark and quiet without the soft glow and constant beeping and alarms.)

Monday, April 28, 2014

Waiting

 Waiting for Calvin to eat and grow is tiring.


At least we can snuggle with him on our couch/bed!
That's the best.


We have fun too, while we wait.
And dress him in clothes again! YAY!


His swallowing seems to be getting better each day!
We are so glad, because some kids never learn how to swallow again, and end up with a feeding tube straight into their stomach.

He does seems to have some post-traumatic stress disorder.
He gets all panicked and looks terrified when we finish feeding him.
He cries HARD.
I try to explain that we aren't going to starve him or drug him anymore, but it might be a little while before he believes it.

Hopefully just a few more days here until we can go home!

Related Posts Plugin for WordPress, Blogger...