Friday, October 5, 2012

Change of Plans?

Chris and I went to a fetal echo to clear baby #3 of any heart defects.  Since Sam's defect is so major, we do have a slightly higher chance of having another baby with a heart defect even though there is no evidence of genetic link.  Because of this our doctor suggests a fetal echo with any future baby just to be sure and to set plans should anything pop up.  Baby #3 was nice and calm and the echo tech got all the photos she needed in 15 min.  She and Sam's Cardiologist, Dr Cardis, cleared baby #3 of any major defects which is very comforting.

While we were there Dr Cardis took some time to talk to us about some information he recently got at a conference with some adult congenital heart defect cardiologists (a NEW specialty, considering people with major heart defects only recently began making it to adulthood thanks to new medical procedures).  He was speaking with the Emory Clinic's Adult congenital heart defect specialist about Sam specifically.  He said this specialist advised him to wait as long as possible, regardless of time of year or exhaustion levels, to have Sam's Fontan.  Although all the reasons are unclear, there are many negative effects after the Fontan.  Heart attacks, strokes, liver failure, and protein losing enteropathy (which is almost always fatal withing 5 years of diagnosis) are the worst, but others exist.  This specialist feels it is better for these kids to be blue (meaning have a super low blood oxygen count) and miss out of physical activity than to have the Fontan and put themselves at risk for the side effects any earlier than necessary.  The Fontan is NECESSARY...Sam won't live without it.  But he wants to buy as much time without these side effects as possible.

So now the game plan is sit...and wait...and just take it a day at a time.  If possible, we will continue to put Sam's next surgery off indefinitely.   I'm torn.  It is physically painful to see Sam exhaust so quickly.  And we are supposed to just let that go as long as we can?!?  But then again, if we jumped into the Fontan early and then he had one of the major side effects, I don't think I could live with myself. 

Two sad stories of Sam's capacity for physical activity from this week:  I arrived at Sam's daycare to find the whole class running laps around the play ground.  Except I didn't see Sam.  When I walked up I realized Sam was sitting by himself in the sand, exhausted.  I asked the teacher why they were running laps and she said the kids wanted to race.  I was pissed that 1) she didn't recognize Sam might be having problems keeping up and might need to be checked on and 2) that Sam was just allowed to sit all alone while everyone continued to play.  I spoke with the director and told her Sam doesn't need to be ELIMINATED from physical activity, but when it is clear he is struggling, they need to find a way to creatively keep him engaged.  In this scenario, would it have really been so hard to say to Sam why don't you come help me pick the winner of the race, instead of letting him sit breathless in the sand alone??  And then this afternoon, Sam and 4 of our neighbors' kids were jumping on a trampoline in our neighbor's yard.  After about 60 seconds I saw Sam sit down on the trampoline and start to cough.  Chris ran over and pulled him off the trampoline but he couldn't catch his breath and kept coughing until he threw up.  He started to cry and said he really needed to rest.  Broke me.  And it's so hard to explain to people while he is out of breath or coughing or just beat after just a few minutes of play.

On the flip side, we attended a fall festival for the Kids at Heart group, a support group for kids like Sam, at a farm in McDonough.  He walked a lot, and never once told us he was tired or looked overly out of breath. 

Bottom line is we can't compare him to other kids.  When we compare him to other kids, he will never ever compare favorably.  He will always look sickly and incapable.  But when we compare him to him...his physical capacity for activity today vs last month vs the month before...not much has changed.  And THAT is how we need to decide when this surgery will be necessary.  And I'm fine with that.  But it is indescribably painful to have to watch your child, who looks and talks and acts like every other kid, NOT get to be a normal kid.  And it's so painful to see in his face that he doesn't understand why. 

We have a busy weekend coming for both Chris and I, a trip to a Greek Festival, and a trip to the fair.  Hopefully lots of fun and lots of good pictures to come.  Here are a few from the Fall Festival.  I can't tell you how much I appreciate the Kids at Heart group.  We have met several families while children Sam's age with similar defects, and I hope they will learn to lean on each other as they get older and be able to find belonging in this special and rare medical-life journey they share.

Tuesday, September 18, 2012

Cardio Update

Sam had his usual every-3-month cardiology visit last Thursday.  He was like an old pro - no fussing for the EKG, BP, Oxygen monitor, or Echo.  Luke, however, nutted up so bad Chris had to leave early and take him home.  I had been anticipating this appointment for the last month or so.  While we don't notice BIG changes in Sam at home, it is becoming more and more obvious that he is just not keeping up with his classmates during physical activities. 

Example:  I took him to a birthday party that was at a gymnastics center.  Every two minutes, Sam would sit, absolutely winded, and have to take a break.  It was obvious he could not run as fast, as far, or do any large gross motor task with as much skill as his classmates. His teacher has been reporting to me that Sam needs more rest breaks, and gets tired even just playing inside the classroom. 

At home, it is easy for us to modify our behavior and routine to fit Sam's energy levels.  We don't take long walks without a stroller/ride on toy.  When we walk into stores we walk S L O W, and then he rides in the basket.  When he plays with our neighbors, he tends to hang back anyway since most of the kids are older and way faster.  We carry him up the stairs even, or go super slow.  But at school, they can't just slow down all the kids to keep up with him.  They can't limit speed or intensity for the whole group just for him. 

So the results of this most recent cardio visit did not surprise us:  Based on Sam's oxygenation levels, which have steadily dropped over the last few cardio visits and are now down to 78%-80%, and on the reports of his increasing fatigue, we are getting close to having to make a decision regarding scheduling Sam's next heart surgery, the Fontan.  Dr. Cardis wants to do this procedure BEFORE another medical crash like last time.  He would also like to do it in the spring or summer of the year, giving Sam plenty of time OUTSIDE of cold and flu season to recover. 

We were originally told Sam would need the Fontan at age two.  Then, because of his wonderful health and a new school of research and thinking with regards to Hypoplastic Right Hearts, we were told Sam could be as old as 8 or 9 when he needs the Fontan.  The problem is, that would mean severe activity restriction and 24/7 supplemental oxygen.  Neither of those are (in our opinion) really appropriate.  And, regardless of supplemental oxygen, if Sam starts to get oxygenation readings around 75%, it's time for surgery.  Unfortunately for Sam, he is a tall, healthy kid.  His size is contributing to his gradually decreasing oxygenation numbers.  Meaning he has outgrown his original procedure and will need the Fontan sooner anyway.

Given all this, it appears that the spring/summer of 2013 may be most optimal for performing this procedure before Sam starts hitting even lower oxygenation numbers (which would make the procedure an emergency vs a controlled procedure).  It would be outside of cold and flu season.  It would also help bring up his energy levels before pre-K starts in August of 2013.  Our plan for pre-K is for Sam to start at Springdale Elementary (our districted public school which is super high rated and all our neighbors love).  I had wanted to schedule this surgery before Kindergarten breaks my heart to think of him being so young and having to sit out of PE or recess or field day WITHOUT the surgery. 

This is a tough decision either way.  In theory, the longer we put off the Fontan, the longer we give Sam before he will need a transplant.  And at the same time, Sam nearly DIED due to medically crashing waiting on his first open heart surgery.  I fear waiting too long on this surgery, and causing another emergent situation.  We also have to find a balance of allowing for limited endurance pre-surgery to buy 'life' time in the long term, vs letting him LIVE life NOW and experience all the things other kids his age get to experience.  Dr. Cardis made it clear to us that Sam will likely NEVER be able to 'keep up' with his classmates.  Best case scenario, his oxygenation levels will only rise to 90% after this surgery, which is still abnormally low and will cause poor endurance levels. 

But I feel like we have to give him every opportunity we can to LIVE, and not just be ALIVE.  If we are coming close to the Fontan based on medical cues we are seeing, then I would rather schedule the surgery for optimal recovery and optimal timing with regards to both cold and flu season and the start of pre-K, than open the door for a possible medical crash or decreased quality of life for Sam. 

We return to the cardiologist in December, where we will have to make the final decision.  Assuming the decision is made to go ahead with the Fontan in 2013, Sam will likely be scheduled for a pre-surgery heart cath (his third cath in his brief life) for the beginning of Spring, and surgery for the beginning of Summer. 

I have dreaded this surgery for a number of reasons.  For's OPEN HEART SURGERY.  Who WANTS to send their kid in to that.  But the biggest reason is because no matter the outcome, this surgery is only 'palliative'.  There is no 'curative' surgery for Sam.  All they can do is perform a few procedures to make him more comfortable and increase his quality of life.  And, unfortunately, the Fontan is the last foreseeable palliative procedure for his defect.  When it fails, which it eventually will, the only option (that currently exists anyway) is transplant.  Our great great hope is that Sam is solidly into adulthood when transplant becomes his next option, and that modern medicine continues to progress to allow a better option for him than transplant.   

We have to be grateful for the amazing health of Sam thus far, and have faith that he will continue to be a 'best case scenario' with regards to his defect and outcomes.  We also have to have faith that we are making the best decision for him that we can, and NOT LOOK BACK.  Please pray for us in this process, and for Sam for understanding and patience.  I look forward to 2013, and getting past this whole process and moving forward with our growing family into all the joys of pre-K and beyond. 

Thursday, August 23, 2012

Certified MALE Carrier

Well, it appears I will be spending the rest of my days surrounded by gorgeous men...this new baby is another BOY!  The OB had an ultrasound monitor that did not have a small screen for me to watch the ultrasound, but Chris was able to watch the whole thing.  About 5 seconds into it, he got a big, dumb smile on his face and I knew right away he saw boy bits.  When she did turn the screen to me it was quite clear what the baby is.  BEST NEWS: full, four chamber heart and otherwise very healthy! 

Sam has been saying that this baby is a 'sister' from day one.  He has even argued with us that it HAS to be a girl.  I was really nervous he would be devastated about another brother.  SO Chris and I went to get him a small balloon bouquet before picking him up.  He was so so so thrilled to get balloons, and I guess that excitement carried over when we told him they were from his NEW baby brother.  He is settled on the idea of having two brothers now so I think all is well with him! 

Monday, July 30, 2012

No more curls!

Little Luke's hair got to the point of being unmanageable.  He had beautiful, loose curls all over his head.  BUT they became a food trap, and in this heat if he even semi-sweated he looked like a grease ball.  My mom came up for a week and kept the boys at home to spoil them rotten.  One objective we had while she was here was to cut his hair.  I had intended to bring him somewhere to have it done but between my mom, Chris, and me, we got it done!  We put him in our swingset's baby seat and I chopped away.  I saved a few curls for memory's sake.  I think I did a pretty fair job!

My mom came up here on a fancy new bus system called the Megabus.  It's a double decker bus that has really inexpensive ticket prices that runs along the east coast.  She took Sam back to Mobile with her on the bus this past Saturday and left us with little Lukey.  Sam was SUPER excited about the bus, and very happily jumped on the bus with barely a wave goodbye to us.  He apparently yelled out "Here we go everyone" when the bus started moving!  He's having a blast in Mobile, and Luke is having a blast being an only child.  My mom, dad, sister, and Sam will be back here in Macon later this week and we will take a short trip to Gatlinburg.  Sam starts back at his preschool next week and I KNOW it is going to be rough on him after having two full weeks of Nana's spoilage.


Tuesday, June 19, 2012

I'm bad at blogging...and other life updates.

So this is by far the longest I have gone without a good update.  We've been busy, that's for sure.  But I really have no excuse.  So here, in brief, are the biggest updates.

1. Sam was teetering on the brink of needing the Fontan surgery now vs. waiting a bit longer.  After some much better oxygen saturation numbers, we opted to wait.  He had a 3 month check up today, and remains stable.  He was SUCH  a big boy, and not only bravely did everything he was asked, he did it by himself, without us holding his hand or motivating him in any way.  Such a big boy.  For now, we will just live 3 month visit to 3 month visit, and hold out on the Fontan as long as is safe.  I am nearly certain he will have it done before Kindergarten (a full 2 years from now), as we want him to be able to fully participate in all of the activities his classmates will be doing (PE, field days, etc).  But for now, we just love him for who he is, which is a pretty darn amazing, miraculous boy.

2. Sam's GI problems seem to be leaning towards a diagnosis of Celiac Disease.  We are still waiting the results of a genetic blood test.  I will update as soon as I know!  I'd be fine with this diagnosis, but the kid only eats bread so I'm not too sure how we will work out the diet change!

3. Luke turned 1 year a few weeks ago.  I just can't believe it.  His baby-hood flew past.  He is crawling like a mad man, pulling up, cruising sideways on the couch, and standing independently now.  He will walk if you hold his hand, and I feel sure he will be walking by himself very soon.  Physically he is 100% my clone.  He has a handful of words and a few funny tunes that he has mastered.  He babbles constantly.  He bites (oops).  He and Sam L O V E each other.   Aside from recent back to back to back ear infections and some rough teething moments, he is a really good, really playful kid.  I can't imagine Sam without him or him without Sam. 

4.  I had to leave my job at the pediatric clinic due to an unreliable patient census.  With two kids now, we just need more steady income.  I am back at the adult inpatient rehab clinic and things are going well.  Except I miss those kids.  I keep up with a few of my favorites still, and melt when I see any new photo of them.  One will be heading to Atlanta in July for his open heart surgery, and I have great faith that not only will he fly through the surgery with ease, but that this surgery will make an enormous difference in his physical development.  Say a prayer for this sweet one and his family!

5. I worked super hard from January until May and lost 20 pounds!

6. Then, I found out I was pregnant!  Yes...number 3 will be here in early January!  We were shocked but plenty happy.  Sam is 95% sure it's a sister for him....we shall see.  I had no pregnancy symptoms with the first two, and have had none with this one either.  We will be going to Dr. Cardis around 25 weeks for a fetal echo, as the chance of having a child with a major heart defect does increase slightly vs the average person once you already have a child with a major heart defect.  And my plan is to gain the least amount of weight as is safe, and I have my OB's blessing.  So all my hard work to get skinny and healthy is not lost! 

I'm sure there is much MUCH more that could have been updated over the last, oh...4 months or so.  I'll try to do better! 


Friday, January 6, 2012

The Last Month Or So...

Where to start...  Ok here will be your order in case you need to jump around: 1) Medical Updates, 2) Pre-Christmas, 3) Christmas, 4) Post-Christmas, 5) Tummy Bug and ER Visit, 6) Disaster Return Trip to Macon

1) Medical Updates:  Luke had his circ and defect repair the first week of December.  I think we were more affected than he was.  Within a day he was back to his normal self, although diaper changes were a challenge for a while.  We went back to Atlanta today for a check up - he had some scar tissue adhesions that the doctor addressed in office (tears were shed briefly) and we will have to go back one more visit to be sure the adhesions don't return.  SOOOO CLOSE to closing the door on one of our medical dramas from 2011.

2) Sam understood 'Christmas' this year...he understood Santa was coming and would bring presents if he was good, loved the tree and lights, and knew the wrapped presents under the tree were not to be opened until he had the OK on Christmas morning. It was fun to watch him get excited (or scared) when he would see Santa.  We went to a neighborhood Santa Breakfast where we got our best "Santa" photo of our several Santa meetings this year.  We went to our annual Christmas Party with Kids at Heart, the support group for children and families of children who have had heart surgery at Egleston.  Sam got to see his heart friend, Emery, and made some yummy cookies (the highlight for him). 

3) Christmas: We drove to Mobile for Christmas this year.  Sam had started to become obsessed with the presents under the tree.  You could tell it was driving him crazy to know he had so many he would get to open.  He would just sit under my parents tree and move the boxes around, and call out which box was for which person.  Chris and I went our for a run Christmas eve morning, and I somehow stepped wrong and sprained my ankle, right along Cottagehill Road in full view of a million cars driving by.  I'm still limping. We went to Christmas eve mass at St. Pius with Fr. Savoie, who was very influential to Chris and I during grade school and high school.  He called all the kids up to the alter during the Homily to read the story of Christmas...Sam ALMOST went, but then got shy when all the other kids got up there and came running back to us.  Christmas morning, Sam was so focused on opening his presents, that he didn't exactly react to the Santa presents that were sitting unwrapped under the tree.  He did his stereotypical Sam thing, and got upset that the arm chairs had been moved (to make room for Santa gifts)...ever the OCD kid.  He he had a FANTASTIC Christmas...between Santa's gracious gifts (including a power wheel and bike), opening presents at my parents house, then having a second Christmas morning at Uncle Will and Aunt Bradley's house, then having a THIRD Christmas morning at Yaya and Pops me he enjoyed himself.    Luke had a blast too!  I can't wait until they are both jumping at the crack of dawn to get under the tree!

4) Post-Christmas:  We kept busy while in Mobile.  We had several 'dates' with old friends, caught up on some movies, and spent plenty of time with family.  Chris and I broke away from the kids and went on a little anniversary trip to Biloxi.  We stayed at the Grand Casino, and had a couples massage in their really awesome spa.  We spent the night at Yaya and Pops house for New Years eve - a rare treat.  Usually the inn is too full.  But we took over and Sam got to wake up to Yaya's breakfast treat - Krispy Kreme! 

5) Tummy Bug and ER visit: Unfortunately there was another little treat for us that morning...Luke was throwing up.  At first I didn't think much of it...he just seemed to be gagging on spit.  But then he threw up a whole bottle.  Later in the day, Sam started throwing up.  While Luke got better fast, Sam did not.  By 6 pm, Sam was pale and lethargic.  I went to wake him up from a nap to check on him and he was white as a sheet, with his eyes half open/ half closed.  At first I thought he was looking at me, then I realized he was not.  My heart stopped, as I honestly considered he might not be with me.  I know that might seem irrational, but keep in mind what would be improbable for most holds a higher probability for us due to his condition.  I immediately jumped on top of him, and he very slowly opened his eyes.  We took him to the ER to get him checked out.  His oxygen levels were quite low (74-76).  The doctor said it was due to dehydration, so Sam got an antinausea pill and several glasses of water.  Thankfully he was able to keep those down, and within a few hours of getting to the ER, he seemed much better (although very tired). His oxygen when we left the ER was where it was at our last cardiology appointment...79-80.  A sad reminder to me that surgery is lurking ever closer.  Sam slept great that night and woke up a little weak but happy the next morning.

6) Disaster Trip Home:  We had accumulated so much stuff over Christmas that we had to take my parents trailer home.  We loaded up and said some sad goodbyes.  Sam was ready to go home though, and was pretty happy to get in the car.  About 13 miles outside of Mobile, we blew a tire in the trailer!  Chris got a 2 ton car jack for Christmas, and got to give it a try on the side of I-10!  My parents had to come meet us to give us a correct sized trailer spare.  Sam got a few more minutes of being spoiled.  By the time we got going and finally got home, it was late.  Kids went to bed fine, but the trip messed up our schedule.  It was a rough start to the next day.  It didn't help that Sam got moved up to the next classroom and had to start with a new teacher.  He LOVES his old teacher and old classroom, and ol' OCD Sam had a very difficult time switching to the new.  He is used to the change now, and very happy with his new classroom which has LOTS of new toys!  But our disaster last few days in Mobile still linger...the tummy bug hit ME yesterday and has had me down through today! 

Ok...I know that was pretty disjointed, but that should catch you up through today.  One of my many resolutions is to keep this updated better through 2012!  One last happy thought:  I have a very good friend who just adopted their first baby.  They will make amazing parents, and have fought through some adversity to get a hold of their beautiful girl.  I also have another good friend who just recently announced they are expecting their first baby.  They, too, are an amazing Christian couple, who have suffered the pain of miscarriage.  Both couples so much deserve children, and I am so happy for them.