Thursday, February 20, 2014

And We Wait...

I feel like every 3 months when we attend Sam's quarterly cardiac check up, it's one of two things.  1: Prepare yourself for impending surgery.  2: Let's hold off surgery. 

The last few visits, Sam has been trending downward with his blood oxygen levels.  This is expected as he gets bigger and 'outgrows' his Glenn Circulation from his first surgery.  This is our first indicator of need for further procedures.  Additionally, things are getting harder for him.  Climbing our stairs in the house is tough.  Keeping up with his 2 year old brother is getting tough.  Walking from one end of his school to the other for lunch is tough.  We were prepared at our last few visits to expect the decision for his Fontan surgery to be made at THIS appointment.  I prepared myself mentally for this for months now.  I was ready to say yes, let's do this. 

Naturally, today our cardiologist decided to throw a curve ball and suggest we wait it out a little longer!

This is a good thing, you ask?  Well, it's complicated.

We have known from day one that Sam would need this upcoming surgery.  We also knew it was essentially the last surgical 'fix'.  After this surgery, the clock starts to tick towards transplant.  So yes, the longer we wait, we assume we are giving him more time before he has to cross that bridge.  But, if we wait it also means he will continue to get weaker.  He will continue to struggle with keeping up with his brothers and classmates, and the older he gets the more he realizes he is different.  The longer we wait, the longer his body has to survive on super low oxygen levels.  He's never been above 85% oxygen, and he is now sitting at 79-80%.  Organs start to 'fail' in the 70s.  The plan is not to let him get below 75%.  But what damage is being done NOW? Studies show kids with cyanotic heart defects have higher incidences of ADD and learning disabilities, among other issues, linked to chronic low oxygen. 

If we go ahead and have the surgery, Sam's blood oxygen will end up in the mid to low 90s.  He will have more energy for both motor and cognitive function.  But, that clock till transplant starts to tick.  Along with other clocks.  The Fontan surgery has serious side effects.  Liver damage and a specific bowel/protein issue are not uncommon and are sadly both fatal and/or limiting to the ability to be listed for transplant.  Scar tissue from multiple procedures leaves these kids at risk for heart rhythm issues that lead to pacemakers.  Not to mention the addition of several other daily medications he will take for the rest of his life. 

Today, our cardiologist said he thinks it's worth waiting another three months to make the decision.  We are buying him three months (assuming no emergencies).  Potentially, we will buy him three more months if he looks stable at his next check up.  We are basically just going to live this out every three months until it's time.  When your cardiologist says, "If he were mine, I would wait" wait.  So we decided low oxygen and poor endurance are worth potentially giving him at least three more months on his clocks. 

I know it sounds all doom and gloom.  It is just the reality of his condition.  He looks so healthy.  He's the tallest kid in his class.  He's so smart; so funny.  No one would guess what is happening inside.  It's so easy for us to ignore it, too.  We have found little ways to get around it.  He still rides in the grocery cart - he can't hardly make it around the store.  He still rides in a stroller for long distance stuff - you should see the looks people give us.  But once every three months at his check up, we get to face the reality of it all. 

I took a beautiful video of part of Sam's Echocardiogram. This is an ultrasound of Sam's heart. A healthy heart has 4 chambers.  Separating the upper and lower chamber on each side of a normal heart is a valve.  Sam is missing the valve on the right side, so a lower right chamber never developed.  Additionally, the upper left and right chambers are missing most of the wall between them.  In the video, you can see what looks like one large upper chamber, one functioning valve, and one large lower chamber.  Truly, half a heart. I tried to find a normal heart echo for comparison.

Sam's Heart on Echo

                                                                Normal Heart on Echo

Saturday, August 10, 2013

What a Summer...

Now that I'm a PT for the school system, I get to have summers off.  I kept all three boys home with me.  It is beyond-words-amazing!  There were certainly times I felt like I was about to go crazy.  And now that it has come to an end, I'm ready to move back into a real routine for all of us.  But we had a great, eventful summer and I can't wait until the next one.

Sam kicked the summer off with swim lessons.  He LOVED his teacher, and begged to go every single day.  She was wonderful with him and he learned so much!  She moved to Colorado mid summer which was traumatic.  It is so hard to take all three boys to the pool together, since they technically all three still need one on one attention in the water.  I'm glad Sam go so much one on one attention with just his teacher this summer.

We had quite a few adventures this summer.  We rented a bay house on Mobile Bay with Chris's family.  His sister and her kids came down from Virginia, along with the rest of his siblings from the Mobile area.  The kids had a GREAT time swimming and catching crabs and fish.  We will certainly try to do that again.  While in Mobile, I helped Chris's family take some updated family photos.  We also got to attend the 50th Anniversary celebration of Chris's Aunt and Uncle. Lots of good family time!

On the same trip, I took the kids over with my parents to Baton Rouge to welcome my brother John home.  He has been in Afghanistan for10 months or so, and the welcome home ceremony was really sweet. 

Not long after we returned from that trip, we all hopped on a plane to California.  The plane rides were less painful with all three boys than I was anticipating, but still made me crave a Jack and Coke or 5.  We got to spend time with my Grandmother at her mountain cabin, where she met Gabriel for the first time.  My three kids are her three great grand kids so I'm sure it's very special to see them.  The two big boys loved getting dirty in her gardens and visiting her little town's ice cream parlor (OK, Gabe liked it too).  The loved the cabin's spiral staircase and loved sleeping in my uncle's camper trailer.  We got to visit St. Andrew's Abbey, a family favorite.  Also got to take the kids on a hike at Devil's Punchbowl (which was a serious mistake but something to laugh about after it was all over).  Gabe got to touch the Pacific for the first time at Dog Beach in the Huntington Beach area.  Sam and Luke got soaking wet in the Pacific themselves, and could have cared less that the water was freezing and the wind chill was near the 50s. 

As a super special unexpected treat, we were gifted free tickets to DISNEYLAND by a friend of my Aunt and Uncle's.  My parent's kept Gabe, and Chris and I took Sam and Luke to the park for the day.  We got to the park the second it opened, and went straight to the Buzz Lightyear ride, which we walked on three times in a row.  I'm pretty sure the boys would have been happy to just ride that the rest of the day.  It was really special to be able to take them on some of the rides that I remember going on as a kid.  And just as special to take Chris there, as he had never been to any Disney park. Luke even worked in a nap around lunch time, when he completely passed out in Chris's arms!  My parent's picked up the boys late in the afternoon and Chris and I spent the rest of the night riding the bigger rides.  All in all we had a super fun, laid back trip to California, and as usual it was bittersweet to leave. 

The week we got home, I started back to work and the kids started back at daycare.  I was ready for some routine in all our lives, and the boys adjusted surprisingly fast.  Sam started Pre-K at St. Joseph's Catholic School this week.  He is so so thrilled about every little detail of his new school and new friends.  On the first day, he told me he talked to God.  I asked him "Did you pray?" to which he responded, "Yeah!  That's how you talk to God. He lived on the moon.  THAT'S the REAL God."  I do believe there was some kind of miscommunication there!!  I can't believe how big he is getting. 

The bad news is he IS getting big.  Physically, he is clearly beginning to struggle with his oxygen levels, which decrease as he grows.  We knew this was how it was supposed to happen, but at the same time there does seem to have been an obvious sudden decrease in his functional capacity just in the last two weeks.  Could be the heat of the summer, could be some lagging issues related to higher altitudes he experienced in California (although he was not at all bothered by it then).  It is difficult for him just to walk the little walk from the car to his Pre-K room.  It is hard to walk to the cafeteria from his room, which is clear on the other side of the school.  He doesn't seem to notice, but I do.  He is breathing like I do when I go run.  Two words, deep breath, two words, deep breath...and so on.  Sitting, you would never know.  But after walking 10 yards of so, it starts kicking in.  We moved up his cardiology appointment to Thursday of this upcoming week.  Assuming no unexpected change has occurred that might be causing this, we will likely begin planning for Sam's next surgery.  I'm not ready.  And at the same time I'm totally over having to watch him struggle to keep up walking just short distances.  Bleh.  Look for an update after his appointment Thursday.

Saturday, June 8, 2013

Lukey Duke's 2nd Birthday

My lil man Luke turned 2 this week.  He is such a wild, wide open little boy.  I feel like he has been around a lot longer than 2 years, and yet he was just a tiny baby a few weeks ago!  He is rough and tumble, and is so physical.  His language is exploding, and he has a huge vocabulary and great conversation skills.  He loves his brothers, especially Sam.  He does EVERYTHING Sam does, and is his constant shadow.  He is a boy through and through - he loves planes, trucks, cars, and dirt.  He has this super cute voice, with a little bit of rasp.  His blue blue eyes have turned to a hazel green, but are just as beautiful.  He dances whenever he hears music.  He's just a dream.

We had a little neighborhood party for him - invited our immediate neighbors and a few friends.  We made it a super hero theme since Luke is a tough man.  I did some pintrest digging and found some cute decorations and ideas.  I did a quick sew cape for all the kids, and had a mask making station.  We had a piƱata, which was really fun to watch.  Luke had a special "Super Luke" cake.  He thoroughly enjoyed running around the backyard with the big kids.  I'm pretty sure he had no idea it was his birthday OR that everyone was there in his honor but he had an AMAZING time. 

Sometimes I feel like I didn't get to experience as much of Luke's babyhood as I did of Sam's.  Maybe I was just more 'aware' with Sam.  I look at Luke now and see a little boy, not a toddler or baby.  It makes me sad and yet I LOVE watching his personality develop and shine.  And trust is blinding!  Love you, Lukey Duke!

Friday, May 24, 2013

Life Lately

Ok.  I'm bad at keeping this thing updated.  Clearly.  In my defense, life has been a little busy.  Here is a BRIEF, photo assisted recap of the events in our life since my last update 7 months ago.  It was really hard to choose just ONE photo from each event to post, FYI.

Halloween.  Luke wasn't impressed.  Sam loved his Knight costume...HATED having to walk the neighborhood. 

My best friend got married in New Orleans.  Truth be told, when I first discovered I was pregnant, one of my first thoughts was how I wouldn't be able to 'enjoy' this event as much as I would have liked to.  But I paraded my belly down Bourbon St anyway!

Sam turned 4.  I don't know how.  I tried to keep it from happening.  Alas, he is getting bigger everyday and it's one of those things out of our control.  My baby is 4.  We celebrated in Mobile with family and hometown high school friends, and many of our friends own children.  It was strange and sweet to see kids we grew up with now growing kids of their own.

We attended Kids at Heart's Christmas party, something we look forward to every year.  Here is Sam and his sweet heart buddy Emery.

We hung out with Santa.  Luke wasn't a fan.

Christmas Morning.  Love this photo of them wondering around, still in shock over the new stuff packing the living room.  My parents and sister were with us for Christmas.  Although they really just came up to await the birth of our new little man.  I really tried to have him before Christmas but again, out of my control.

Gabriel Matthew did finally arrive on December 29, minutes before midnight.  December 30th is our wedding anniversary.  This photo is Chris and I having a take-out dinner and tv-movie date in my hospital bed with our new lil babe to celebrate 6 years of marriage!  Gabe was 7lbs 8oz, and his little face was a near identical match to Luke's.  From the time I walked into the hospital to the time he was born was only about 4 hours, and I got my epidural about 25 min before he was born.  Good thing we didn't wait to long to go in to the hospital!

Brothers.  Luke and Sam loved Gabe right away.  Luke wasn't a fan of the hospital, but was fine with Gabe once we got home.  They love getting right in his face and talking to him.

Chris got a last minute call that he was on the list to ride with his Mardi Gras association.  I took the boys to his parade and (with the help of Chris's family and sweet friends), the boys got to see Daddy on the float.  I'm not so sure they understood what was going on, but Daddy did get to throw them some special toys which they appreciated.

Chris's brother and sister-in-law came up for a visit with their daughter, Penelope.  We all went to the Atlanta aquarium.  Sam and Penelope really do look similar (although this photo isn't the best, but it was the only one where both of them were looking and smiling). 

"The Walking Dead" fans - we live about an hour from the town where they filmed a great deal of this last season's show.  We made a lil visit.

Gabriel was baptized in Mobile in February.  Chris's brother is the Godfather, and my BFF (from highschool, my college roomie, and my bridesmaid) is the Godmother.  Fr. Savoie, who was assigned to Chris and my gradeschool for his first assignment out of the seminary when Chris and I were in 7th grade performed the Baptism.  Fr. Savoie has known us since I was taller than Chris. 

We took the kids to see Yo Gabba Gabba Live in Atlanta.  We didn't tell them until we got in the theatre.  They were SO excited.  But when the REAL DJ Lance Rock came onto the stage, Luke FREAKED out.  I don't think his brain could really process how this 2D character just jumped out in 3D onto the stage.  Luke spent most of the concert in shock.  Sam LOVED every second.  We had great first row balcony seats, and Sam danced in the aisle the whole time.

In March we drove from Macon to Virginia to spend a week with Chris's sister and her family.  It was a nightmare.  Luke was sick the day before we left, but seemed to recover by the time we got to Virginia.  Unfortunately he brought the stomach bug with us, and it hit nearly everyone in the house.  We spent a week cleaning vomit from kids in both families.  But looking back I can ALMOST laugh about it.  We did get to see snow, and we took the kids to the Museum of Natural History in DC.

On our way back home from Virginia, we met my parents in Gatlinburg at their cabin to celebrate Easter.  We (barely) made it through Easter Vigil mass, dyed eggs, had an egg hunt, and played with toys care of the Easter Bunny.  We left Sam with my parents for a few extra vacation days, and we took the other kids back to Macon.  Luke got some much needed (almost) one on one time with us at home, and Sam got spoiled by Nana and Pop Pop.

We took a whirlwind weekend trip to Savannah to see some friends who live in Chicago.  We took a trip to Tybee Island.  The boys LOVED every second.  Sam cried and sobbed when we had to leave the beach.

Just a quick note about Gabe.  He is an angel.  This kid is so laid back.  And Thank GOD!!  I don't know how we would survive if he wasn't.  He smiles at everyone and is hardly ever fussy. 

While Gabe is laid back, Luke is a wild man.  We decided to build a fence around our backyard to help contain him.  Additionally, you really can't see our backyard from any functional location in our house, and I want to be able to send them outside to play without me necessarily having to be right there with them.  Here is Luke 'helping'.

Sam played t-ball this Spring.  It was a little scary for us, as I didn't want to find out he physically couldn't manage it.  But we ended up on a great little team, with coaches who were super relaxed and not at all pushy about winning.  Sam enjoyed batting, and running the bases (although he is not an overly skilled runner).  He greatly disliked playing defense, and got bored quick.  But we really had a great time watching, and I see many baseball seasons in our future.

There were a handful of other occurrences over the last 7 months: -I now work as a PT in our public school system. I love working with kids again, but often have to deal with kids who have very difficult home lives.  It reminds me daily of how lucky I was growing up, and how much I want to continue to provide my kids with all the love I can manage.  -We had to make a tough decision and put our sweet dog to sleep.  He got a tumor and gradually seemed less and less comfortable.  It was tragic, but we will remember our many many good days with him.  -Our hot water heater (located in the attic) busted and flooded our master bedroom.  We spent half a week in a local hotel while a crew cleaned the mess.  The boys LOVED the hotel.  I nearly went insane, as Chris was out of town on a business trip and missed all the 'fun'. 

Summer has started for me!  I am spending the next week deep cleaning the house, organizing, throwing things out, etc.  Then I will have all three boys home with me for a whole 8 weeks!  We have lots of plans. Swim lessons, story time at the library, a trip to will be a good summer.  I will do my best to update a little more frequently!