Wednesday, July 10, 2013

Scary Stuff Intermingled with Hilarity

Monday, we took Parker back to Egleston for his CT-Angiogram.  Going into it, I didn't know too terribly much about how it would go, only that it involved injecting dye via an IV, then him "shooting through the tube", as it were.  Having had a regular CT scan myself, hooray kidney stones, I knew it wouldn't take too terribly long and that he would need to remain still, which would probably involve giving him some twilight drugs and strapping him down.


Mike and I were NOT PREPARED for the several hour ordeal that it turned out to be.   It became clear pretty quickly that they were planning to put him all the way under for the duration of the scan, which is a lot easier said than done for a kid with Parker's history.  We had to watch the informative videos about sedation and contrast injections, which do a great job of outlining the worst case scenario in which your child will die instantly during a routine exam.  We weren't too bothered by those, 'cause we've been around the block a few times and have heard the worst case scenario more times than I can count.

I did start to get freaked out when the anesthesiologist came in and ran through the extra risks Parker faces during sedation that normal kids don't.  He has a compromised respiratory system, which increases the likelihood that he won't be able to breathe on his own through sedation and will require bagging or even intubation.  He has a history of both tachycardia and hypertension (although resolved long ago), and injecting him with propofol could throw his heart into cardiac arrest.  "Propofol?  Like, Michael Jackson overdose Propofol???"
They first had to give Parker an airway exam, and contemplated a chest x-ray, before they would even consent to sedate him. They were all very kind and very sweet and explained everything very well, but it was just much more involved than Mike and I were prepared for.

They let us hold him until the propofol hit, which took all of 30 seconds. He went completely limp, and my mind immediately went back to the first month of his life, when he was medically paralyzed-- it looked the same.  Floppy baby, mouth hanging open, eyes rolled back, just awful.

They ushered us out pretty quickly and had us wait in the recovery room.  "Three minutes!" they said.  It took more like twelve, and I tried so very hard not to panic.  I was so easy breezy headed in there, but all of the "we aren't sure he's even a candidate for sedation" talk had me on edge, to say the least.

They finally wheeled him back in, and they said, "Since it's his naptime, he might sleep for a bit... Oh-- no-- here he comes!"  Sweet Pnut, who burns through IV narcotics like they are KoolAid, woke up almost instantly. Well, sort of. He spent a good five or six minutes singing at the TOP. OF. HIS. LUNGS.  Our sweet nurse was trying to give us discharge instructions but was constantly interrupted by


"If you notice that he seems sluggish...


"We'll keep you here until he eats..."


Eyes completely closed, rolled on his side, singing his heart out.  I tried so hard not to laugh, but the entire radiology department was giggling.  Poor booger.

He finally came out of it enough to eat some graham crackers and drink some juice, which meant we were free to go.
A wee bit stoned, but at least he's mellow.

We got the heck out of dodge, and of course had donuts on the way home.  We hope to hear nothing until our surgeon appointment August 8th.  If he calls before then, it's because he found something to be concerned about.  No thanks!

Yesterday we took the minions to see Despicable Me 2, which was adorable.  Jeremiah loves to go to the movies, and Parker did great for his first trip.

Today, I took Jeremiah to get fitted for his ringbearer's tuxedo for Cousin John's wedding in October.  The salespeople made quite a fuss over him, and he ate it up with a spoon.  He loves to dress up, be it in costumes or "handsome clothes", and he is so excited.  The shiny shoes were his favorite part.

Sweet boy.  Being a fashion plate can be exhausting.

Sunday, July 7, 2013

Fun for the Fourth!

I have always loved Independence Day.  All that it means... all that the celebrations entail... it's just good times.  Most of my memories of July 4ths gone by revolve around 2 things:  ribs and fireworks.

Our very dear family friends, the Jenkinses, always had both.  We spent countless July 4ths with them, and I was thrilled thrilled thrilled to have them join us at our cabin at Lake Rabun this year.  They moved away many years ago, but they will forever hold a special place in our hearts.

The Grillmaster.  Nobody does it better. I am not embarrassed to say that I consumed somewhat obscene amounts of pork products Thursday, nor am I ashamed to admit that I have been visiting my refrigerator in the dead of night to nibble on leftovers.

Love love love love that we got to spend time with old friends this year!

Our trip to the lake was somewhat hindered by the near-constant rain, but we got to spend time with many of our favorite people, light sparklers to substitute for the rescheduled lake display, and be grateful to enjoy the freedoms that we do.

I even got to pressure wash the boathouse with my daddy, despite everyone mocking me for doing so in my sparkly jeans.  Whatevs. :-)

I really was expecting to spend more time thinking "This time last year, we were _________."  But, somehow, I haven't been dwelling on the past as much as I imagined I would.  The anniversary of Parker's near death hemorrhage came and went.  Repair surgery anniversary came and went.  Extubation came and went... I have been so busy sucking up every last minute of my boys that I just forget to think back to darker times.  But the 4th of July week sticks out in my mind.  Parker was finally out of the critical NICU, and we were on the road home.  And then he had a really, really, really bad day.  His IVs went back in. His oxygen got cranked back up to the maximum amount.   It all turned out to be due to faulty respiratory equipment, but it was a huge setback that led to a MAJOR meltdown for me.  We were headed to a 4th of July themed party, and sweet Mike sent me a text from the hospital:  "All ready for the party, mom!"

And I just LOST IT.  I was foul that my baby wasn't home yet, I was foul that the equipment had messed up, and I was foul that I was the one who had to figure out what the problem was.  It was NOT. GOOD. TIMES.  We spent our Independence Days as a broken family, and all I could do was hold onto hope that we would be together for the next one.

And we were.

Monday, July 1, 2013

Medical Updates and Cuteness

My favorite thing is when I get "gentle" nudges in person or via email that I haven't updated the old blog in a while.  My response is always the same-- "I have two boys to chase around!", which is part of the reason.  The other part of the reason is that summertime is synonymous with RIDICULOUS tv programming, and perhaps, PERHAPS I have gotten sucked into such mind-numbing IQ consumers as "Pretty Wicked Moms."  After the boys go down for the night, I spend my evenings doing foolish craft projects and rolling my eyes at the TV while not being able to turn away.  The time I could be using to update this page is spent listening to such witticisms as "I had a c-section because I was too posh to push" and "My face is so thin. I am so evaporated."

No shame.  Shoot your barbs of judgment at me. I can handle it.

In actual worthwhile news, the 12 month mark for Parker meant it was time to run the gauntlet of doctors appointments yet again.  Here is the rundown:

12 month well check was perfect.  24 lbs, 32. 25 inches tall.  Nothing to report.  Always happy to have a "normal" visit.

Developmental Clinic 
Saw the psychologist and PT/OT.  The psychologist ran him through a good hour of cognitive testing, which was the most fascinating thing to see.  She had an enormous suitcase of toys and objects that she put in front of him to see how he responded.
Could he get the Hot Wheels car out from under a clear box?  Could he put the cheerios into a pill bottle?  Could he screw off the top of a pill bottle? (YES HE CAN, which is good to know in the "holy goodness, let's recheck the babyproofing" arena)  Could he find the pretty pink bracelet under a blanket?  Could he turn the pages of a book?
Yes yes yes yes yes.  Mommy starts to puff up with pride about Genius Baby in her lap. 
Could he point to the dog in the book?
Could he point to his ears?
Could he build a tower at least 5 blocks tall without knocking it over?
Could he say puppy?  Could he say cow?  What does a cow say?
Mommy now starts to deflate and plan early intervention strategies.

"Well!  He did AMAZINGLY GREAT!" says the doctor.  Upon seeing my puzzlement, she laughs and says that they keep going with the test until the baby hits the plateau and stops performing. Vague memories from my EdPsych classes in college emerge.  She transfers the results to a score sheet and Parker perfectly in line for a normal 12 month old, with many skills in the 18 month range (particularly in social development, self help, and cognitive skills).


So very pleased.
PT/OT results were that he has caught up in gross motor, which was his area of weakness at 9 months.  Fine motor is at the low end of normal, and they wrote a script for an OT consult just to see if there needs to be any intervention.
They also wrote a script for speech because he is a mouth breather.  My pediatrician and I both felt that was a little bit strange-- of course he's a mouth breather... homefry is working with a lot less lungs than the rest of us. He babbles, he has many consonant sounds, he mimics voice intonations, he eats everything in sight, etc. etc. etc. I might go for the consult just to see what they say, but the ped said to remember that the developmental people only see him infrequently, it's different doctors every time, and that in general they tend to fall on the "overly cautious" end of the spectrum.
Have to think on that one for a bit-- our insurance won't cover speech at all (DO NOT GET ME STARTED ON THAT SOAPBOX) and our deductible just rolled over as of today.  Joys and thrills.

It's funny to hear, throughout my CDH community, how widely the follow-up treatments vary.  Lots of surgeons and pediatricians send these babies to every specialist under the sun for the first few years, while others wait to make referrals until the need arises.  Both Dr. Parker and Dr. Putnam are on the "we'll let you know if you need to go" side of things when it comes to pulmonology and cardiology, but Dr. Putnam is completely on board with pre-emptive strikes when it comes to hearing.  For some unknown reason, CDH babies are at SIGNIFICANTLY higher risk of late-onset hearing loss than most kids, and also higher than other kids who were on ECMO for different reasons.  The primary culprit is medication, particularly Lasix (which Parker was on for MANY weeks to reduce the swelling in his body).  The hearing loss for ECMO kids tends to manifest several years into life, with most showing absolutely no sign of loss until average age 5.  Some kids start as early as 3 or as late as 8.  Regardless, Dr. Putnam feels strongly that hearing checks at least yearly (probably twice yearly) for the forseeable future are a good idea.
I'm down with that.
We went Friday, and Parker passed with flying colors.  Totally fascinating to watch that testing as well-- they put an earbud into each ear and sent sound through, measuring the vibrations of different parts of the ear.  We then went into a soundproof room and listened for voices, rumbles, and hisses to come from all around us.  When he looked the correct way, he got to watch a little cartoon. 
Maybe I got to play too, since I was holding him in my lap.

Hooray for perfectly normal hearing!

Next up, a week from today, is a CAT scan to check blood flow in his chest.  This is in response to the dark mass that plagued his early chest x-rays, but got fainter and fainter as time went by.  It wasn't visible at all on the 9 month film, which is encouraging, but Dr. Parker wants to run this test to be sure that nothing is hiding in there that needs to be surgically removed.
Send a prayer for us on Monday-- Parker has to have an IV put in and the test itself might take up to an hour of him being strapped in and grouchy.
HOPEFULLY after that, we will be free to resume our normal schedule of summer time fun.
And trashy TV.

And now, almost 2 months later (who's the BEST MOM EVER?  *crickets*) please enjoy Parker's one year portraits taken by my aunt Nesie.  Any and all comments about his silly hat and girly outfit (you know who you are!) can be put into the comment box.  It's coincidence that the comment box looks like the garbage can. :-)