CHOA is the Best (and other News)

Sam had his ENT appointment in Atlanta today.  We nearly missed the appointment because somehow we got lost...even though the office was RIGHT outside of Sam's CICU stepdown room from when he had his surgery!  Of course from the second we step in the door, we remember why we love CHOA so much.  EVERYONE is nice, helpful, and truly cares.  Everything runs efficiently, everything is clean...it's just the best place for anyone to take their kid to if they are in need of special care.

Anyway, the doctor was super great.  He looked in Sam's ears with a microscope thing (of course the nurse and I had to totally restrain him which he of course fought with all his might).  He saw right away that Sam has his 8th double ear infection.  He also admitted that Sam definitely does need tubes.  He immediately asked us if we had every had Sam's hearing tested.  Of course we hadn't since he was born.  The doctor ordered a hearing test and the audiologist came right away.  Sam and Chris went into a sound booth and the audiologist did her thing.  In the end Sam's hearing came out below normal, and worse on the left than right.  She says it's probably just because of how clogged up his ears are, and we would retest after tubes were placed.

The doctor (who is the only ENT who does surgery with the cardiac anesthesiology unit at Egleston) looked at his surgery schedule to find us a date.  He is clearly a busy guy.  Not only is he the only ENT who does surgery at Egleston, he is also the only guy who does cochlear implants in Atlanta.  SOOOOO his first open appointment for surgery was OCTOBER 20!!  UGHSLKSHDFLHUGH!  He did graciously tell us that if anything came open before that date he would put us in. 

Poor little Sam, though.  I knew he was getting an ear infection.  Aside from our puke/diarrhea night, he has spent the last few nights crying every 30 min.  I've been giving him Motrin every 6 hours or so for the last day, and he still had a 99 fever at the ENT today.  He was a good boy the whole time (aside from battling me and the nurse).  He didn't like the ENT too much after the microscope incident.  As we were leaving, Sam, Chris, the ENT, and I were walking to the front door.  Sam, who was walking with us, wouldn't take his eyes off the ENT...didn't trust him I suppose.  Anyway, poor suspicious Sam walked right into a wall and dropped to the floor.  Chris and I were laughing so hard, the ENT ended up picking him up off the floor.  Poor kid.

So to recap: CHOA is amazing, Sam needs tubes (Oct 20), Sam walked into a wall. 

~Kathy

Boooooo to Thieves

So last night, our car got broken into.  It was parked in our driveway right next to the house.  Unfortunately, we left it unlocked.  Naturally someone would be checking for unlocked cars on the ONE NIGHT we leave the car in the driveway AND unlocked.  My husband had his Zune and Garmin GPS stolen.  The person didn't take my purse, or some of Chris's work tools.  Makes us think it was probably a teen.  I wrote an email to everyone on our neighborhood directory and got back quite a few responses from other people who had stuff taken out of their cars last night, too.  That really just ruins your sense of safety and confidence in your neighborhood.  And we live in a good neighborhood, too.  Sigh.

Of course, we probably came pretty close to catching the jerk.  Last night, we were up every 30 min with Sam.  He had a good tummy bug (diarrhea and puke).  He was pretty dehydrated today but was fine.  We stayed home together and vegged out.  He did help me do something productive: finish shopping for all of our nieces' and nephews' Christmas gifts!

On deck for tomorrow: Sam's big ENT appointment with the only ENT in Georgia who will perform any ENT based surgery on children with congenital heart defects with Egelston Hospital's Cardiac Anesthesiology team!

~Kathy

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