Successful Cardio Appointment

Sam had his regular 3 month cardiology appointment.  In case you have forgotten our history, Sam is a major doctor-phobe.  You could tell they were prepared for a fighting match.  The intake nurses closed the door behind us when we got into the EKG room, and talked over a game plan.  But Sam was surprisingly docile.  He still isnt a big fan of the stickers for the EKG, but he let them get all the readings they needed.  Pulse oxygen was at 83%, BP at 100, weight was 30lbs and heights was 36 inches (that's three feet tall people!). 

Sam even made friends with Dr. Cardis and his intern and kindly let them listen to his heart with little fuss.  Dr. Cardis ordered an echo which was unexpected on our part, but apparently it was time.  I totally thought Sam would nut up but he was near perfect for the echo nurse.  Dr. Cardis read the echo and said Sam looks great and very stable.  So stable that he wants to cut Sam back to once every 6 month visits after his second birthday.  YIKES...that feels like FOREVER between visits!

Let me take a moment and explain why Sam will be holding off on the Fontan as long as possible.  For one, his anatomy will allow us to do so.  Unlike many hypoplastic right hearts, Sam DOES have a pulmonary artery (even though it is small).  This assists in a small way with getting 'blue' blood from his lower body to his lungs (his anatomy is quite complex now...I'll save the drawings for another post).  But Dr. Cardis explained that in kids who don't have at least a minimally functioning pulmonary artery, the risk of developing small collateral vessels in the lungs rises, which leads to decreasing pulse ox rates and heart failure.  This puts the kids in for the Fontan earlier than with kids who have a pulmonary artery.

After the Fontan, the count down clock to transplant starts.  On top of that, there are consequences for other body organ systems due to the Fontan circulation.  If we can hold all of this off, we will.  Dr. Cardis told us we will go for the Fontan under 3 circumstance: 1)Sam goes into heart failure 2)Sam is unable to participate in regular daily activities due to poor oxygen levels 3)If we feel like we want Sam to participate in more advanced activities (like sports) in a greater capacity than he is currently able.   Well trust me, as much as I want Sam to experience sports, we will NOT be putting his life at risk just to do it.  Soooo, considering only circumstance 1) and 2) will lead us to surgery, Dr. Cardis thinks Sam could go YEARS before needing the Fontan...maybe up to age 10 or more.  He has told us this before, but he gave a great "Sam's Anatomy" review and I understand more clearly how we will accomplish this. 

All in all, a GREAT cardio visit.

Yesterday, a fellow heart mommy hosted a 'blog event' to help heart families link to each other.  Everyone was to share their "Heart Story" and post a link on her blog.  Our story is posted on Sam's Half a Heart page, and you can visit her web page (link below) to check out other families stories.

~Kathy

First Haircut and Other Goings-on

Sam took a 2 hour nap today.  When he woke up, his hair was INSANE.  It was frizzy, knotted, standing up on end.  It was clearly long past time for a haircut.  We took him up to a little place right across the street from our neighborhood.  I totally thought he would freak out the whole time, but he did SOOOOO good!  And the lady was super good with him.  All his silky baby hair is gone...he has big boy hair now.  So sad.  But he looks super cute.  I'm going to get him some gel so we can spike his hair up. 

Two other things I would like to briefly bring your attention to:

1. Head over to our other page (Half a Heart Full of Life) and read the most recent post.  I have a prayer request for a beautiful heart baby on the other side of the world.

2. The Strong Legs Run is coming up in November.  This is a fundraiser for Children's Healthcare of Atlanta's Sibley Heart Center (the group who saved Sam's life, and the group who will some day perform more surgery on him).  This is a 10K, 5K, 1 mile fun run, and kids 100 yard dash with a lot of other fun events scattered in between.  It takes place at the Atlanta Brave's baseball stadium.  This year we are going to make a separate team just for Sam (looking for team name ideas if you have any).  I will post the information as soon as I can.  We may be making team t-shirts to sell as part of the fundraising.  If you want to run/ walk with us, or just want to help us raise money for this amazing cause, keep your eyes open for updates soon!

~Kathy

Our Week Without Sam

We took our first trip to Mobile in FOREVER two weeks ago.  We drive down for a few reasons: to attend a baby shower for Chris's brother and his wife, to spend the weekend at a resort on Mobile Bay with Chris's family, and to leave Sam in Mobile for a week for his own personal vacation.

We had a super sweet baby shower for my brother-in-law and his wife who are expecting a baby girl.  It was a big Wimberly Family Event, meaning most of Mobile was there.  I brought Sam, since most of the people who were there were at my baby shower and haven't seen me or Sam since.  We had a great time, and Sam was pretty good.  He's still pretty shy.  I've resigned to Sam's low oxygen being the cause of his anxiety with strangers and new places.  We know anxiety is a common occurrence with heart kids, but I just assumed this was part of a normal kid's development.  But he just gets so upset with changes in environment and people that I have to give it another cause.  ANYWAY, it was a great shower...Bradley got some wonderful things, and I can't wait to see that baby's sweet face!

We also spent the weekend at the Grand Hotel in Point Clear, Alabama right on Mobile Bay.  There was no oil to be seen, the weather was great, the food was amazing, the pool was really fun...we had a great time.  Chris's two older sisters and their children were there, along with his parents and younger brother.  Sam got to hang out with his cousin who is just a few months older.  They are still in the solitary play phase, but had some pretty good interactions. 

Chris and I left to home to Macon, but lil Sam stayed in Mobile with my family.  He spent the week between my parent's house and Chris's parents house.  I feel fairly certain he didn't think about us much.  He had a great time...he went to the Explorium, went shopping with my mom and sister, hung out in the Wimberly's back yard with all 6 of his cousins.  Chris and I, on the other hand, got all kinds of things done.  We turned our attic into a new guest room/ office, went out for a fancy dinner and movie date, went shopping in Atlanta, and I attended a continuing education class.  I missed Sam, but I didn't have a hard time leaving him in Mobile because I knew he would be well cared for and would probably have much more fun there than here!

Since Sam has been back, he's been a pretty good boy.  He moved up to the next level class at school (older toddler room).  He went shopping with me for some new clothes...he's super tall, and has hit 30 lbs!  He has been talking in 'full sentences' for a while.  NOT that you could understand ANY of it...he just babbles to you like you're supposed to know what he's talking about.  But recently, I have actually started to understand some of it.  Today, he asked Chris "What are you doing".  He told my mom (over the phone), when asked where Relo was, that "he's outside".  Let's be clear...it is very difficult to understand what he's saying...but I assure you, he is truly saying these things.  He's so smart.  I love him.

~Kathy

Things Sam Does

Sam is growing everyday.  He's getting taller, getting a sense of humor, and getting vocal.  He has finally picked up a few more words other than Dada, Momma, and Bye Bye.  He now also regularly says Stinky, Dog, Ball, Door, Shoe, Sock, Eye, Nice, Hey, Hi, Ruff Ruff, Car, and PooPoo.  He can say a handful of names: Nana, Pop Pop (which he says in a whisper thanks to a funny incident on our camping trip with my family), YaYa (which he says when he sees the house phone), Pop, and Aunt Amanda (which comes out as a three syllable word similar to 'annannda'.  He has also said a hand full of two word phrases. He can say 'Bye Bye Daddy (or Momma)' and 'Daddy, where are you' (which really sounds like "daddy, ahh ooo"). 

He especially loves all things Dog and all things Car.  I had made a diaper cake for a co-worker, and there was a dog stuffed animal on top.  I was carrying him out to the car and we passed by the cake on my counter.  Sam took one glance and said "Ruff Ruff".  As if I didn't think that was genius enough, we were merging onto the interstate yesterday and Sam said "Ruff Ruff Car".  I thought he was just running through his favorite words, but then I realized the truck just in front and to the left of us had a dog in the back.  SOOOO smart, right??  He really does amaze me, considering we went from nothing to a whole bunch of words in just a few weeks.

His walking is getting much better, although he still falls and trips frequently...more so than I think is normal but then again I don't have anything to compare him too.  They daycare thinks he is doing great, and is already moving him up to the older toddler room.  Even though he isn't as good of a walker as the other kids, the administrator said that he is really good during structured activities in his current room (unlike some of the other kids), and she thinks he would learn more in the next room up because it is more structured.  I kind of hate it though...we JUST moved up from the baby room a month ago!  As long as they don't come to me and say they are moving him on up to Kindergarten in a month, I guess we'll survive.

~Kathy

On Grief and Joy

First, a Wimberly family update:  Sam is becoming quite the walker...and door opener...and cabinet inspector.  Chris and I are about to renovate and finish one of our larger attic spaces to make a playroom/office/whatever room.  Our 4th of July was wonderful: bike ride, church (with a successful trial run with Sam in the child care room), great couponing grocery store visit, Sam played with our neighbors kids in the sprinkler, watched fireworks care of Arden Park Daddies, lovely steak dinner.  All is well in Wimberly land!

But my thoughts have been other places these last few days.  A beautiful heart baby, Ruthie, who we have followed for some time, has FINALLY been blessed with a new heart.  On the same day, a beautiful 9 year old patient of mine passed away after 9 years of severe compounding medical complications of a genetic condition.  In both cases, there is joy and grief. 

For Ruthie, and her faithful parents, being on the transplant list since February has been a true test.  They have truly been an example of how to give your worries over to God and trust in the notion that there is a greater plan out there for all of us.  I have said it before, and must say it again: seeing these heart children survive waiting on the transplant list, and then successfully receive and thrive with a new angel heart is so relieving to me.  I know Sam's fate will one day hinge on the results of the same journey.  I marvel in these children and families who go from rock bottom to a birth into a new life.  But to get there, to achieve new life, there must be death.  Another family has to go from life to rock bottom.  A mother and father, sisters and brothers, grandparents and family...all must say goodbye to a life that has hardly begun in order for another child to go on.  Death creates life in a literal sense.  It is beautiful and horrifying.  It is a hard pill to swallow sometimes...that one day we may be praying for the death of another to bring life to Sam via the selfless generosity of a grieving family.  That someone else's grief might bring us ultimate joy...it is a concept I doubt I will ever be able to fully grasp.

I had another encounter with grief and joy this week.  I have been working as a pediatric physical therapist for 5 months now.  In my first few weeks, I met a beautiful little girl with an extremely complicated medical past.  Though her body and brain had been ravaged by years of suffering the symptoms of her condition, two things shined through: her perfect innocence, and her families unwavering faith.  I felt at once completely overwhelmed by her impairments and yet completely compelled to do everything I could to help this child and this family.  I researched what I could, spoke with other professionals, tried to find new medical equipment to ease the burden of caregiving.  Just when I started to feel like a plan was coming together, she got sick.  Within a week she was REALLY sick.  Her years of suffering had finally broken her body.  Her family was quick to point out, though, that this was a moment for joy.  Her suffering would soon be over, and she would be dancing with the angels in heaven in a way she had never been able to dance on this earth.  At the same time, I can't imagine the depth of this families grief, as the daughter they have literally built their lives around slips away.  Their most recent CaringBridge post was two sentences long.  It described the scene of this beautiful creature's passing from this earth to the next, as she and her sister fell asleep together wrapped in each others arms. 

A few posts ago, her mother shared the thoughts of another mother who had also had to watch her daughter fade away.  She said,"Grief and joy danced together as if they had a right to."  I have contemplated that idea deeply over the last few days.  I have decided that rarely do grief and joy NOT appear together, although it is often hard to see one or the other at the time.  Grief and joy shape the most pivotal moments of our lives, and in times of extreme grief, we must find the joy in order to make sense of the pain and to move forward. 

I would like to share one more story.  Krisanna, the inspiration for my career, and her family are another example of allowing joy to wash away the grief.  Though she had been diagnosed with a cancer that would almost certainly one day take her life, she continued to spread the most bright yellow attitude of hope and gratefulness.  Her parents were the same way.  Even now, almost a year since her passing, her mother writes often of the 'coincidences' throughout her day that remind her of her daughter's bright shining life.  When reading the last few passages of Krisanna's life on her CaringBridge, there is very little grief.  Don't get me wrong, the loss of their daughter was absolutely devastating.  But even in this worst of the worst moments, her family chose to share every drop of joy they could find, which has left a true legacy of 'yellow' - Krisanna's self chosen color to describe happiness.  One particular passage I reflect on often was a story Krisanna's mom shared from one of Krisanna's final days.  She was beginning to sleep often and have difficulties telling the difference between reality, memories, and dreams.  She had begun to tell her mother she was seeing angels.  That alone gives me chills.  Her mother goes on to write that Krisanna told her the angels wanted her to choose between two beautiful things.  Krisanna never described what exactly the angels were offering her, but her mother believes they were trying to coax Krisanna away from her ailing body to her rightful place in heaven. 

I'm so glad her mother shared that story.  I don't know what exactly Krisanna was seeing, but I whole heartedly believe what she was seeing was real.  It solidifies the sense that, in the darkest hour, there is something greater awaiting us.  That in our greatest of grief, there awaits joy.  I can see Krisanna playing in a beautiful yellow dress, perhaps the beautiful 'thing' offered to her by the angels.  I can see a whole, able bodied little girl, my patient, skipping and smiling and doing the things she never experienced here on this earth.  I see Ruthie's new guardian angel, birthed into a new life of his/her own in heaven, smiling down on the brave and generous family members who allowed his/her life to grant life to others.  All three of these angels lived a heartbreakingly short life.  But short does not have to equal sad.  All three have touched the lives of many many others in a way that I feel I, in my 27 years have come no where close to doing.  If I have learned one thing from these three stories (and trust me, I have learned MUCH more), it is to find the joy in the grief, and to allow the two to dance together without shame when the music is just right.

~Kathy

Vacation

After Sam's disappointing ENT experience two weeks ago, we recharged on a family vacation! 

We drove up to Stone Mountain Park in Atlanta for the first leg of the journey.  My parents and sister met us there.  Stone Mountain isn't exactly our idea of a great camping vacation, but we went there for a purpose.  Chris and I signed up for the Muddy Buddy race months ago.  This is a bike/run adventure race that benefits the Challenged Athlete Foundation, which provides special equipment and prosthetics to disabled athletes.  The race is a team event with trail biking, trail running, obstacle climbing, and mud pit crawling.  It was a lot of fun (even though it was 140 degrees outside).

After the race, we drove up to Great Smoky Mountains National Park.  We camped in the park for 5 days.  It was much better weather in the higher elevation.  We did some beautiful hikes, played in the rivers, and tagged along as my parents bought their 'dream' retirement home in Gatlinburg, TN!  Sam had a FANTASTIC time being TOTALLY spoiled by my parents and sister.  He enjoyed camping, too, and got to spend every night on a queen sized bed all to himself in my parents pop-up tent trailer. 

Even better, Sam learned to WALK!  He finally caught the hang of it while we were shopping in a great outdoor sports shop that had a super cute crawl space decorated like a bear's den in their kids clothing department.  I guess he got excited and curious enough to just go for it!  Since then, he's practically mastered walking.  AND he wants to walk EVERYWHERE.  We could not be more proud or happy!

Unfortunately, he did recently master something else: the fine art of temper tantrums.  He now REGULARLY throws himself down on the ground, kicks his arms, throws his legs, bangs his head, and screams at the top of his lungs.  Usually, he does this for NO APPARENT REASON but to try it out.  Ugh.  We are doing out best to ignore it, but if anyone has any other suggestions, I'm willing to listen!

~Kathy

Soooo upset...

Well, Sam was supposed to have tubes tomorrow.  We went for pre-op today, and his anesthesiologist chickened out of the surgery bc she was scared of Sam's heart defect. 

I got Sam to the ENT center for Pre-op at 1.  We waited for 45 min.  During that time, Sam and I had an experience I'm sure most mommas have at some point.  He made a big poo diaper...and momma had no fresh diaper on hand.  I improvised...cleaned up Sam and his diaper as much as I could and reused it.  Totally gross, I know, but he couldn't sit it a totally dirty diaper!

After 45 min they brought us back and spent all of 5 minutes asking us basic questions.  I made sure the doctor knew I was worried Sam was coming down with another ear infection. Sam has gotten a runny nose, and then this morning woke up with a croupy cough.  He assured me they could still do the surgery with an ear infection.  BUT he didn't even look in his ears.  Oh well, I thought, move on.

After we finished there we went straight to the Medical Center's Surgery Center.  Sam couldn't have the procedure at the ENT center bc of his heart.  They just wanted him in a more acute care location incase he needed it.  We waited in the Surgery Center for an hour.  For the most part Sam was good.  He did gag on a french fry and throw up all over himself, myself, and the floor.  So if you're keeping track, we are on our 3rd hour of doctors offices, we have a had a big poo, and a nice juicy puke.

We finally got called back and once again, the whole process lasted about 5 min.  They just asked us basic questions.  The nurse was super nice, and wanted to know all about Sam's heart, and I totally indulged her.  Sam, stressed out from the long waits and yet another small doctors exam room, fell asleep in my arms while the nurse and I talked...he hasn't fallen asleep in my arms since he was an infant.

Just before we were finished, I asked when we would get to talk to the anesthesiologist.  I only asked because when our CARDIOLOGIST CLEARED US FOR SURGERY (an important part of this story), he told us to be sure the anesthesiologist was clear on Sam's condition.  The nurse called and brought the head of anesthesiology to talk to us.

RIGHT AWAY, the anesthesi looked totally freaked out when she read Sam's diagnosis.  She immediately started back pedaling, saying that we couldn't do the tubes procedure at the Medial center.  She was saying that if something went wrong with Sam and anesthesia, the Med didn't have the know how to save him due to his complex heart.  She said the best thing to do is cancel surgery and start this whole process again with a doctor at Egleston in Atlanta.

I was BAFFLED.  1) The pediatrician cleared him for this 2) The cardiologist cleared him for this 3) the ENT cleared him for this 4) we KNOW heart kids who have had tubes done at the Med.  WTF!!! 

Trust me, if the HEAD of anesthesi was too nervous to touch Sam, then  I don't want Sam anywhere NEAR the Med.  BUT I so upset we aren't doing this surgery tomorrow.  He's suffered enough with these ears.  On top of that, I feel like the ears are the key to him walking and talking better.  From our checkbook and calendar's perspective, Chris and I have taken off MULTIPLE days to get Sam to this point with the ENT, not to mention multiple co-pays.  Now we are starting all over. 

The Anesthesiologist told us we need to do this surgery at Egleston, where they have a cardiac anesthesiology team.  That's all fine and dandy, but that requires more days off from work and more co-pays and MORE TIME for Sam to continue to suffer with ear infections, poor speech, and poor walking.  I'm so so sick of the medical center.  After our bad experience the night he almost died and now this,  I have pretty much decided we need to just move to Atlanta and buy a house across the street from Egleston.

In a way, that is a joke.  But in a way, it's not.  In reality, we are now an hour or more away from the only hospital who can help Sam with ANYTHING, not just his heart.  Think about what that means for the future.  Chris and I will never be able to just move anywhere we want...we will have to stay near a pediatric cardiac center.  Sam will never just be able to move anywhere.  We're already limited in our travels due to altitude concerns.  I don't want Sam to be held down by this stupid heart thing but everywhere we turn, we hit walls.

So the next step is to get an ENT at Egleston and start this whole process all over again.  Even that will be an act of congress, because our ENT in Macon didn't know anyone at Egleston to refer us to.  To add insult to injury, we had to pay over 600$ today in 'downpayment' for Sam's tubes.  After they officially cancelled the procedure, we were told they couldn't cancel the payment...that we would have to wait for 24 hours until we could put in a request for a refund. 

And after all of this, we are still left with a little boy who is probably coming down with an ear infection.  I got in appointment with the pediatrician tomorrow.  Naturally he would get sick right before we leave town...

The two highlights of the day: Sam falling asleep on my shoulder, and my amazingly good couponing week at publix (spent $40, saved $95).

~Kathy