4th Birthday Photo Session

4th Birthday Photo Session

Friday, August 31, 2018

The Heart Surgery Anniversary -- 8 Years

I started this blog August 10, 2010 as not just a way to inform Andi Bean's followers of the day-to-day updates when she was medically fragile, but also a way for me to process the daily grind of hospital living, specialists galore, and a life I never expected.  This is the time of the year where I truly stop and reflect on where we've been and where we are today.  It is with humbled gratitude, and honestly, heartache -- that I reflect on Andi's complex open heart surgery a mere 8 years ago (9/1/10).  Why heartache?!  My heart has broken a dozen times for friends we've recently lost, some that we have followed from the start. (Asher, Noah, Kane, Moriah... just to name a few.) It's been a hard, hard road - but it enables us to pause, reflect and appreciate all that we have survived.

At my every 2 years cardiology appointment, 2018
Looking back at the blog is honestly something I love to do.  I rarely make time to do it anymore, but when I do - I read an entry and it transports me right back to where I was, what we were experiencing and how it truly felt.  Some of my best writing was when we were confined in the hospital.  I had very little else to do. Although I was supposed to be working, people tended to leave me alone - knowing that I was facing every parents worst nightmare.  

Andi finally had her heart surgery, Complete A/V Canal,  (A Complete A/V Canal is a complex heart surgery that repaired a hole in an upper chamber, a hole in a lower chamber and made one large valve into two.) on 9/1/10, after a few weeks of reflux-induced (stomach, bladder) infections, and pneumonia.  She was such a mess in heart failure.  The diuretic Lasix (and sometimes a second, potassium-sparing  diuretic) would make her pee off excess fluid, so her heart wouldn't have to work so hard, but if she lost too much fluid, she'd dehydrate and have trouble breathing.  It was such a shit show of I don't know -- things like "we'll see," "it depends," and "Andi will let us know."  Like most medicine, it's a damn guessing game. A balancing act of chemicals.  Sad, but true.

Reading some of those early entries, makes me forget all the many things I should be doing (including getting Andi off her iPad and off to bed)... and transports me back to a time where we weren't sure we would even be together another day. 

Here are a few of my favorites:

Sadly, the photos of that time were lost.  I mean, I still have the photos, but they were deleted from some photo album account that fed this blog.  Honestly, I just haven't made time to plug those old photos into this blog.  Sort of low on the totem pole of life, ya know?  But the visual account of what her frailness looked like.  The sweats from the Lasix, the mouth goobers, the big ol' dark eyes on this lil' bitty head. 

It also doesn't surprise me to revisit the damn leaky g-tube.  I forgot that bitch (sorry, Dad... but honestly, it was a hell of a thorn all damn day long) started leaking way back then.  I think it was March of 2011 where her pediatrician had her admitted to figure out why she was dehydrating.  That, and to probably get me out of his office several times a week complaining about the leak.  When they pouched it (and they admitted it was not a great method of collecting data), but they determined she was leaking out 25-35% of each feed, sometimes up to 50%.  Uhm, yeah. The "solution" caused more problems in the end, and they had to surgically tuck her stomach lining back down the hole and close it up.  Uhm, yeah.  So, it's interesting to me to revisit these entries and transport myself back then.  I am guessing the entire medical community is thankful that they saw me then, and not who I am today.  My mouth and I probably wouldn't have allowed half of the guessing game bullshit she endured.  I found my voice as I got more entrenched in the life as a CHARGE parent.  But today's voice would be a version of an angry Madea who would probably get security called, repeatedly.  Again, it's a good thing for them.  Most of them are good people.  The g-tube surgeon though needs a rusty fork taken to his private parts.  Just sayin'.  See... I'm not as pleasing as I used to be... but then again, we survived all this shit.  We were lucky. 

Still humbled, still grateful.  I still think of Dr. Stephan Langley and his incredible team who performed our successful surgery.  I am sad that I no longer know where he is to send him a yearly heart surgery update, and I'll probably forget to put together an update card for her old cardiologist (Dr. Kelly) at OHSU, but damn, if we aren't totally grateful to all the many people who helped get her here.  (Minus of course the first (*&^$@&a$$clown) g-tube surgeon who I want to poke holes in.)  The second surgeon though, whose name honestly escapes me this minute, his work was perfection.

And furthermore, we move forward with our broken, one-mended heart, and keep our friends we've lost so close to those hearts.  None of us are guaranteed a tomorrow.  This life of ours, reminds us of that more often than yours likely does.  It is in their honor we hope to remind you, so you cherish your time by making it the best use of your time with us.  Grateful.  Humbled.  Love. 

Watching Moana while getting an echocardiogram.  I delighted the echo tech by yelling/screaming during a scary part of the movie.  She easily jumped a foot or two and then giggled when she realized what I was doing.

Flirting while getting my ECG.
Just to reiterate, the cardiology check-up showed her heart function is totally stable and better than deemed two years ago.  Her cardiologist is very happy with how she is doing.

Now, the CHARGE Syndrome Foundation has begun a new fundraising campaign. Andi's personal goal was somewhere around $8,000,000.00.  Given you apparently know Andi, have possibly read about how CHARGE Syndrome has affected her life, the good and the bad... I would ask that you consider clicking over to her fundraising page and throwing a few bucks toward "her" effort -- okay, mine.  If we raise $3k, we get a free admission to conference in Dallas next year.  Although, if we achieve that, I will likely donate it to someone that otherwise wouldn't be able to attend. 


So as we celebrate our 8th heart surgery anniversary, I ask that you be mindful of your own wellness, be thankful and kind, and be extra generous by helping to kick Andi's fundraising campaign into gear. 

Tuesday, August 14, 2018

Surgery #10

Today, I scheduled Andi's surgery #10... a bilateral bone conduction anchor surgery.  Just after Thanksgiving, Andi will be going under for an anchor (a big screw) being placed behind both ears, feeding sound directly into the bone and thus, the nerve. It will take six months healing to allow the bone to surround the new hardware.

Surgery #10.

We haven't done any sort of "procedure" since January 2015, when we put a set of "T-tubes" in her ears.  A long-enduring set of ear tubes to help her ears properly drain.  One of those t-tubes is still in place today, in her "good" ear - if you will.  Prior to this t-tube surgery, we haven't had a "real surgery" since surgery #6 I believe.  i think 7, 8, an 9 are ear tube placements.  But still, a surgery is a surgery, and when it comes to a kid with CHARGE Syndrome, nothing is guaranteed.  When it comes to another anesthesia, intubation, intrusion... nothing brings back "medically fragile" parenting PTSD than the simplest words used in a hospital.  Words like,  'it depends', 'deductible', 'just in case', and my personal favorite -- the eau du hospital hand sanitizer scent.  That is what really sends my stomach into Cirque du Soleiel stomach flips and feeds the anxiety.

But to answer the "why!"  Why put her through this surgery.  First of all, we're doing bilateral.  Andi only has a functional auditory nerve on one side... but, technology has advanced to the point where they can implant both sides with "an anchor"  (a fancy screw in her skull), and then program the hearing devices to feed into the left ear, so that she'll be sent auditory sounds from both ears, but to the one ear that can process sound.  It isn't guaranteed that she'll be able to determine what side she's hearing from, but it will likely alleviate a majority of the "what?" from the right side.   Our ENT described it as such - she'll get 80% hearing from her left ear, and the other 20% will be sent to her left ear.  It's going to improve her hearing.  And transitioning from the soft band (the headband she's been wearing these past few months) to the anchor, will improve her sound quality, her hearing - as it will be a more direct line through the bone.

Our objective is what every parent wants, the best quality and quantity of life that we can provide.  For Andi, one of the most sociable, musical and extremely engaging children I've ever met - improving her hearing will only strengthen her ability to become the Dr. she has been programmed (insert Mom's dreamy sigh here) to be.  This kid with her personality, her incredible memory, her command of knowledge, her ability to empathize, and her own set of experiences... who else would you envision taking care of your grandchildren or grandchildren's grandchildren?  I think our lil' Andi Bean will be the perfect stewart of all things medical, and write a path unlike anyone else.

Risks.  One risk is infection.  We have a plan in place and our ENT swears we will do everything in our power to minimalize our risk, which she swears is small.  Another risk is slippage or dislodging the device.  While it's healing for six months, the base post will be under the skin - held in place by stitches to keep it under the surface while the bone grows around it.  There will be no need to cut her hair, or shave a section of her hair off.  She also plans to put a secondary hole next to where the main post will go, in case we run into any sort of issues, such as dislodging the initial post.  None are expected, but it's a precaution they take while in there to aid in speeding up the healing time should the secondary hole be needed.

Surgery #10.
We are giddy at the opportunity for technology to advance our baby girl's hearing.  We are nauseous at the idea of another procedure, another surgery, another recovery, more pain management, more downtime.  We dread the idea of infection, the idea of one wrong move in something such as gymnastics class knocking a well-intact post out of place.  But, generally, any sort of surgery produces a whole stream of anxiety that most people don't understand unless they've lived it.  Sadly, tonight - I'm far too tired to explain it any better.

Lastly, need I remind you that this is all in attempt to allow Andi to utilize the lately technology enabling her to hear as well as she will at this juncture... (until technology advances even further.)  Our surgery is slotted for after Thanksgiving.  So, please... start laying out your good juju for our Andi Bean.  And start stocking Mommy's Vodka cabinet...she's going to need it.  *kidding on the vodka, Dad!*  :)