A Much Overdo Update

Wow...life has been BUSY!!!  Stephen's surgery was July 31st.  We spent just shy of 3 weeks in the hospital and the better part of 6 weeks healing at home.  He then had the INCREDIBLE opportunity to go on his Wish Trip (Nov 1st) to Disney World through Make a Wish San Diego.  What a dream come true!!!  This trip was a true blessing and something he really looked forward to through his stay in the hospital.  On one of his hardest (and most painful) days, looking at pictures of the parks was what got him through!  He spent 3 days at the Disney Parks, 2 at Universal, 1at Legoland, and was even able to visit Gatorland, the Kennedy Space Center and go on an Airboat ride to see gators in the wild!  The trip was magical!!! I should probably find time to do a whole post on it, but for now, here are a few pictures!

 To make life a little crazier, we moved at the beginning of December...3 weeks before Christmas!  This move was such a blessing.  Joe had been commuting to Brea from Fallbrook for almost a year (2 hours each way).  He is now 11 minutes from work and it is so wonderful to see him again!

That being said, we are still currently keeping his cardiologist in San Diego, so this past Tuesday (March 5) we drove 2 hours for his check up!  Praise God ALL is good!!!!  There is always some anxiety and worry that comes with these tests and appointments.  As a heart mom I am well aware of the possibilities and outcomes, and having a good report is just music to my ears!  Matter of fact...he can now go 6 months before his next ECHO and appointment!  YAY!!!  His Fontan is doing well, his numbers are where they should be, his oxygen is rising, and his energy has dramatically changed!  He asks to take the stairs and can walk/run longer than before.  That being said, he will still tire quicker than a kiddo the same age with a whole healthy heart...but for his special heart he is doing INCREDIBLE!!!

That brings us to baseball season!!!!!  This is Stephens favorite time of year!  He eagerly waited for it to come.  Like asked me EVERY day when his first practice would be.  You guys, this kid is such a stud!  He had the option again of playing up with the 7-8 year olds or down with 4-6 and of course he chose up!  And though I think this age is too young to start pitching, for better or worse, this level is kid pitch (and of course thats the reason he chose up!).  He wanted to be a pitcher!  I tried to warn him that being 6 he may not get the chance, but low and behold he was the starting pitcher of their first game!  He pitched one inning, faced 4 batters, and struck 3 of them out!!!  I was all kinds of proud watching him smile on the mound.  He had SO MUCH FUN and every parent could see it!  And then he had a great hit up the middle at his only at bat (It got rained out after 2 innings!)  Such a fun game!!!!

Knowing all that he has gone through this year makes watching his games even more special.  And his pink lips!!!  Oh my word!  Last season he struggled to make it to first base and had deep purple lips most of the time.  This year is completely different...yet no one at the field (other than my family) would even notice.  That is one of the tough things about this move...I miss seeing all of our friends at the baseball field!  And last year he was part of such a supportive team with an incredible coach and a great group of kids... and I wish they could see him now!  They would know the difference.  They would know how far he has come and how much stronger he is.  Shoot...just his pink lips alone would be a stand out to them (as they are to ALL who knows him!)  I remember his very first practice last year a few of the boys asked me why his lips were purple.  I LOVE the honesty of kids and I love that they ask at that age rather then just stare and wonder.  And if they saw him now they would know just how pink they are...and I am sure they would tell him!  

God is good.  He has seen Stephen through so much and I am SO happy to be on the other side of the Fontan.  Honestly, I am still starting to heal from it all.  I am learning more about myself and my personality and how I deal with pain and suffering.  I can hold it together in crisis and stress mode, but when things finally start to settle, I finally start to feel.  And with the busyness of the past 7 months, I am just starting to process it all.  I know that won't make sense to everyone, but to some they will know exactly what I am saying.  And I have seen it come out in Stephen as well.  The way he handles certain situations stems from the stress and trauma he faced this summer.  And rightfully so.  I can't even imagine what it must have been like for him.  It was awful having to watch him suffer.  I hated seeing him wince or cry out in pain.  And though it emotionally broke me, I wasn't the one with chest tubes and wires.  Ugh...how I wish I could take this all away from him!  But I am grateful have God that has never left him and will never leave Him.  To have a God that sees Stephens joys and hurts is with him through both.  To have a God that knows his heart, his fears, his worries, his likes, his loves.  To have a God that knows Stephen better than I ever can.  I can surrender my insecurities, unknowns, worries and fears and ultimately my child to Him, because He has got this.  

And thank you to all who have faithfully prayed for Stephen and our family on this journey.  Your support, encouragement and prayers mean so much to us!!!

Thank you!!!!!

Well hello, it has been awhile!

It has been about 3 weeks since I last posted and I thought I would fill you in on Stephen and why I needed a bit of a break.

First, Stephen is doing incredible!  His last appointment was September 5th and we got the wonderful news that his effusion was GONE!!  He was looking so great that we got clearance to NOT see the doctor for 6 weeks!!!  As you can imagine, the longer you get to go without appointments is a huge step in the right direction! 

His scars are healing beautifully and he is becoming much more comfortable with them...such a praise!  He was super sensitive to them at first, as he had never seen them so red and fresh before.  He asked if they would "turn white again."  Once his chest tube sites FINALLY healed, he was able to take showers again...another HUGE praise as they were a bit slower to close and one got slightly infected. 

September 11th marked 6 weeks from his surgery and the low fat diet ban was lifted!!!  We celebrated that night with PIZZA!!!!!  He of course got his favorite...meat lovers!!!  I am pretty sure he went on to have pizza 3 or 4 times that week...he REALLY missed it!

On September 11th he also began this really sweet music therapy by Resounding Joy.  Due to a grant he gets to receive 8 FREE sessions in our own home...such a blessing!  Stephen has seemed to really respond to music and his first 2 hour long sessions have truly been full of joy...and a lot of silliness!!!

All in all, Stephen is becoming more and more himself.  He is not struggling with separation anxiety as much as he was in the first couple of weeks at home.  There was a point early on when he not only needed to sit by me on the couch, but also had to be touching me at all times...and I just tried to soak those cuddles in!  He also sleeps fully through the night in his own bed, and is ok when Joe or I leave the house...just not when we both leave together!  So, many steps are being taken in the right direction!

Physically he feels pretty good.  Sneezing no longer hurts, that was so sad to watch!  And he has been out in the front running and playing soccer.  As for baseball, he has tossed a few underhand and has swung lightly on the bat.  I think the first time he tried to play it hurt a bit, so he has been a little guarded since.  I am hoping in another week he should be all clear to swing away!!!

As for this mom, this surgery has been hard on me.  Harder than I honestly ever imagined.  Prior to this summer, I would say I have somewhat always carried a full load, and to the best of my ability, did it well.  I never felt overly burdened, it was stressful at times, but with God's grace and strength, I could always make it work.  Before stepping into that hospital I always had so much of myself to give, but right now I am broken.  The stress of Stephen’s condition and surgery weighs heavy on this mom’s heart.  I don’t have the same amount of myself to give as I did before, and what currently remains needs to be directed to my family.  It is hard to say (and admit), but right now, I just can’t juggle it all.  Working 30 hours a week as the Children's Director of our church, homeschooling my 4 children, and trying to keep up on all of the appointments, medicines and normal daily life tasks is just too much.  I knew something had to be taken off my plate before I would break.  

So, at the beginning of the month I submitted my resignation.  This was not an easy decision, nor a decision I had planned on making before going through Stephen’s surgery.  I have absolutely LOVED my 10 years in the Children’s Ministry department at Riverview Church.  I began within a few months of Joe being hired as the 2 year old teacher in Sunday School for Kathleen.  Within a year and a half I became her assistant and spent 6 1/2 years serving side by side with one of the greats!  The last 2 years directing have been a true Joy.  I LOVE what I do.  I LOVE teaching the kids. I love giving them high fives and hugs every week.  I love watching them learn and grow in their faith and in life.  I also LOVE planning events…but I think most of you all know that!  I love taking an idea and seeing it played out.  I love the craziness of the Harvest Fest, the joy of OCC and the absolute fun that is Family Element!

This news usually spurs on the question of if we are moving.  The answer is yes...eventually.  The ultimate goal when Joe got his new job/career back in February was to always try to eventually move closer.  But with a cut in pay, me working was essential, and we figured we would wait a year or so and reevaluate the whole commuting thing.  The fact now is I can't work.  I just can't.  So either way we are going to start living off of some savings...so why not do it closer to Joe's office and spare him almost 4 hours each day in a car 5 days a week!  I always thought I would have to step down from my position because we were looking to move, yet it is happening quite opposite really.  Because I stepped down, it just makes sense to try to move. 

So the current goal (things always change) is to try to get our house on the market in the next month or so and see what happens.  I have not doubt that it will sell eventually, but as for the timing, I am choosing to trust that God will bring the right people at the right time.  If that is 6 days, 6 weeks or 6 months, I am confident that it will work out as it should.  We are covering this future move in prayer.  We have no clue what city we will end up in, but we pray that we would land in the house, neighborhood and church that we could be useful in.  We pray for our kids as this is the only home they have ever known.  That the excitement of moving close to family will help mitigate the sadness of leaving friends.  And that our friendships here will remain even if more distance is added between us.
So this is where I find myself.  There is a season for everything, and right now I need to be entering a season of "rest".  Not sure homeschooling 4 kids is ever "restful" but getting to do it without balancing working 30 hrs/wk should make it feel that way ;)

I have so much more to say on events that have happened lately, and will hopefully get a chance to write again soon.  Until then, thank you so much for your continued prayers for our precious son.  God is SO good!!!


  

Follow Up Appointments

Stephen had his first follow up appointment this past Tuesday (the 21st) down at Kaiser in San Diego.     This was Stephen's first time back at the doctor post surgery, and it didn't go that well.  Clearly, he is a bit traumatized from all he has gone through, and we get it.  Simply asking him to take off his shirt is just too much.  He doesn't want anyone to see it (most of the time) he definitely doesn't want anyone to touch it, and he will tell you "I'm scared it is going to hurt."

Before this surgery, he got an ECHO and EKG every 6 months and they were a piece of cake.  He would literally have the BIGGEST smile and giggle because it would tickle when the tech was getting the images.  Tuesday, he turned and cried when they just wanted to place the EKG stickers on him and didn't want to take his shirt off at all...it broke my heart.

Luckily, he has an incredible cardiologist and he didn't rush it.  He started being silly with him, and distracted him with questions, and took his picture and showed him how he uploaded it on his computer, and eventually Stephen allowed them to do what they needed to.  Not with a huge smile, but with no tears...which felt huge at the time.

We didn't get horrible news, but felt a little disappointed to hear that his chest X-Ray was not clear and that he had a mild to moderate effusion on the right side.  We were sent home Tuesday with a change in medicines (upping one diuretic and changing another diuretic a new one) and had to return Thursday for another visit.

He has more smiles at the 2nd appointment!

In the meantime we were unable to get the new medicine.  Almost all of the medication he is on are compounded prescriptions and our local pharmacy sort of messed up in thinking they had all the ingredients...and then didn't.  So we showed up to his next follow up having upped the one medication but stayed on the previous diuretic unable to begin the new one.  Good news...his effusion did not increase...and actually looked smaller.  His cardiologist felt relieved by the news and said he was glad that he wouldn't need to be readmitted into the hospital...I didn't even know that would have been an option!  He even decided to forget about the new medicine they never got us and just kept the increased dosage as it is seeming to work.  So, he is currently on two diuretics, 1 three times a day and the second twice a day...which means he needs to be near a bathroom at all times!

As far as physical healing, we saw some HUGE improvements this past week.  Wednesday was actually the first day he was walking upright, as before he would walk hunched over.  He also has had more energy, whereas before he would want to lie on the couch quite a bit during the day.  I have, however, had concerns with the way his 2 original chest tube sides were healing.  His medial one lost its steri-strip first (you just wait for them to fall off) and appeared quite wet and irritated.  Luckily after just a night of airing out it looked much better and seems to be healing well.  The second one not so much.  The steri-strip for that came off Saturday and it looked pretty red and angry.  Matter of fact, the redness seemed to be spreading away from just right around the wound, and I was a bit worried.  In ended up getting in touch with one of the cardiology fellows at Radys, and based on the pictures I sent, she called in an antibiotic and said we should follow up with the CV surgery team early this week.

And by the 2nd appointment he agreed
 to take off his shirt!
So much easy to do the tests this way

I was actually pretty pleased, that after just a day of antibiotics, they redness seemed to already be fading, but prayers for this site to heal properly would be greatly appreciated!  SO, it looks like we may have an appointment early this week with the surgery team, and another follow up with his cardiologist Sept 5th to check on the effusion.

Outside of physical healing, Stephen has some emotional healing to do.  He had slept in our bed EVERY night the first week we were home.  We then convinced him to start in his bed a few of the nights (huge step) but he always ends up back with us.  Happy to say, last night he finally stayed in his bed all night, but its an ordeal each night to start there.  He is even having some separation anxiety from me.  Last Saturday, on Joe's birthday, we had plans to go to dinner with just the two of us...it had been AGES since we got to go out alone.   Poor Stephen cried at the thought of me being away from him.  He was going to have a blast with his Papa and Grandma, but he only wanted mom.  Even once we got back he said I can't leave him again.  I am not too worried.  I know it is all still fresh, and will eventually pass, but it just hurts knowing he is struggling on the inside too.  He is scared something will happen.  He hasn't been able to describe what that something is, but he knows he is scared and wants me there.  And when we asked why he needs to sleep with us, he said...and I quote "I just had heart surgery and need you"...cue tears.  Sweet boy!  It's easy for me to want to brush the hospital off and try to get back into "real life" again.  But, he can't and that is OK.

This has been such a different experience from his previous 2 surgeries as he is obviously, for the first time, aware and a part of it.  He has memories, and he may always have these memories.  He has on multiple occasions recalled some of the painful parts of the stay, but he has also told me how much he misses one of his nurses...I think he has a crush!  Matter of fact, today as I had to give him a sponge bath (he can't get his chest wet right now) he complained and said he wished Kelly could do it.  I told him that I do it the same and he said "no, Kelly is better!"  Whatever!!!  I laughed, smiled and was grateful that these amazing nurses gave him some good memories to recall amongst the harder ones!  We got to talk about their dance parties, and how he would pretend to sleep when they came in or try to shoot them with his marshmallow gun.  I like to cling to these memories, over the ones where he is being pinned down screaming for them to stop...those ones are still traumatic for me to recall!

All to say, pray for our little guys heart.  Not only for the physical healing, but for his emotional healing.  God knows.  He knows what Stephen needs.  He knows where he is at.  And I just pray that He would fill his heart with His divine peace and that He would give us the wisdom and knowledge in helping Stephen navigate all that he is processing.

As for his low fat diet...97% fat free hot dogs have been a lifesaver!  This was his breakfast the other day...only 5 grams of fat total!  I mean, usually I would not be a fan of hotdogs for breakfast...but this kid wanted some meat...and finished both of them!  Hotdogs (1 gram of fat each), black bean burgers (1.5), baked chips, and fat free cheese to make quesadillas have been the bulk of his meals/snacks.  He has a list of foods, including pizza and burgers, that he wants to have as soon as as this low fat diet is lifted!  2 more weeks (hopefully) and we can begin to introduce some of those things back in his diet!!

But I will just leave you with this...91% oxygen!!!!  BEAUTIFUL!!!!  We haven't done much since coming home form the hospital, but already see a HUGE difference in his activity level.  For instance, he can walk all the way from our car to the doctors office...that has NEVER happened!  He would always need to be carried bc he would get too tired.  So this elevated oxygen is amazing!!!  I can hardly wait to see how it helps him on the ball field!!!

Day 17...a few days late ;)

Saying "See you later!" to Stephen's
wonderful surgeon, Dr. Nigro

Sorry for the lack of posting, but yesterday was the first day back that I felt remotely functional!  Friday and Saturday were lounge around in your PJS and do NOTHING types of days and Sunday was a turn around in energy and mental clarity =)

So, here is Day 17...a few days late!

I figured I would start with a discharge recap b/c I am sure everyone was just as surprised as us when they found out we were going home on Thursday!

If you need a recap of what happened before Thursday this post is it!
Day 16

Basically, Wednesday morning they puled his TT line and we expected that they would keep him under observation for a minimum of 48 hours.  He had ZERO SVTs Wednesday /Wednesday night (hooray!!) and Thursday morning our amazing cardiologist, Dr. Davis, walked in and said "so, do you want to go home today?"  Honestly, a huge part of me wanted to say, "no, can we stay one more night!" but then the idea of being in my bed, at HOME sounded too good to pass up!

I had to trust that they wouldn't send us home premature and that they felt confident his rhythm would remain intact.  And so, the process of discharge began!  I had no time to think, or call Joe to have him take my place, so I had to help pin the poor guy down and they took out the pace maker wires and 2 peripheral IVs...it was heartbreaking!  He kept SCREAMING "No, no, no, STOP, STOP, Ow, Ow, STOP!!!!"  My heart broke.  Hearing/watching your child, you baby, go through pain is gut wrenching awful.  I don't know a single parent who wouldn't want to trade places with their child.  I just held him and prayed.  When it was over he excitedly yelled "All done?!" and then gave a big smile of relief and even gave the 2 nurses a high five.  This kid...he is all kinds of incredible!!!

The next big step to going home was an ECHO which didn't start until about 2pm.  We were in no hurry, I actually liked him being monitored still, so we just began taking loads from our hospital room over to the RMH.  He was officially discharged around 4:30 and it felt SO great walking out of the uni with NOTHING attached!!! And even more special, was doing it as a family!!!  Michael, Lizzie and Audrey were HUGE supports to Stephen through this whole process.  It was so important to Stephen to have them there.  Honestly, I think family brings a very important aspect to healing, and the fact that the Ronald McDonald House makes it possible to keep us together through a hospitalization like this is amazing.   I could, and maybe will, do a whole post later on this!

Anyways, we all headed over to the RMH because we had a lot of packing to do!!  I slowly began the process of packing as the kiddos played outside and watched a show.  We finished getting the car ready around 6, and decided to stay for dinner and the cute therapy pets that came!  We finally got home around 8:30, and were greeted by the sweetest decorations and food in our fridge!  We have the best friends and neighbors!!!

Stephen is continue to heal well.  We have his first follow up appointment tomorrow (Tuesday) and I am eager to hear how he is doing from a medical standpoint.  The entire healing process takes 6 weeks, so for 3 more weeks, he is on a low fat diet and is physically basically limited to walking.  He is already planning to eat pizza and play baseball as soon as the restrictions are lifted!!!

Joe and are are still getting the hang of the medicine routine.  He has to take 5 in the morning, 1 in the afternoon and 4 at night.  It won't be so hard while we remain at home, but will be tricky when we start heading out in a few weeks!

Please pray that his body continues to heal well and that he remains infection free!  We are not quite ready to be around crowds of people yet (don't need the germs) and have to give him the space and rest he needs.  But God is SO good!  And we are grateful for His provision through it all=)

Lastly, I just want to again thank everyone who has prayed us through this, who has financially supported us, who helped contribute to Stephen's Bravery box and fun LEGO mini figure hunts, and who took the time to send texts, comments and calls...you are ALL so VERY appreciated!!!!!!  Thank you!!!  It takes a village...and a body of Christ =)

Checking out the new Padre Play Room at the Ronald McDonald House!!

I think snuggling these cute doggies made us all happy!!!

Headed Home!!!

Such a sweet welcome home!  Each heart has a bible verse or message from the kids and teachers in our Children's Ministry!

Stehen's wounds.  It is always bittersweet looking at his chest.  It breaks my heart to be reminded of what he had to go through, but it also makes me SO proud of how he endures it all so well.  These scars will always be a testimony to his strength, courage and bravery!

We are Home!!!!

I can hardly believe it, and will write on it later, but we got home at 8pm last night!!!!  Just wanted to give a quick update to all who have been following our journey!!!  Thank you!  Hopefully later today I can get some pictures and the story up =)

But for now we are enjoying Home Sweet Home!!!

Day 16

If you haven't read the latest update here is a recap...

We were set to go home Monday, but Sunday night Stephen began having some SVT (Supra-ventricular tachycardia).  The first instance of it of it began Sunday morning when the nurses were messing with his TT line (the central line that leads directly into his heart).  It had been giving them trouble when they tried to draw blood back for days, but when they would apply pressure to the area, or manipulate his arm, they were successful.  That would lead you to think in some way they were able to "move" the line.  They tried for 45 minutes with no success, but during this they noted his arrhythmia.  It happened again later in the afternoon when they attempted for another 30 ish minutes to get blood (they were trying so hard so they could avoid poking him).  Fast forward that afternoon and night it picked up a bit.  The cardiologist was not too concerned (even agreed with us that it could be the TT line) and said he wouldn't lose sleep over it...a good pace of mind.

That brings us to Monday morning when all the sudden we were told they would begin giving him a new drug to bring his heart rate down (it was getting up to 140-190 at rest).  The EP (electrophysiologist) had read through his charts and thought this was necessary based on the amount of arrhythmias he was having.  So a little bummed, but no big deal.  I take the kids to the Angel game that night, and sleep at the RMH with them.

Monday night/early Tuesday morning things went south.  The medicine brought his heart rate too low, and made his sinus node sleepy, so he began skipping beats and eventually he skipped a beat for 3 seconds which is when the docs/nurses rushed in and hooked him back up the the external pace maker.  So plans changed again  Now the game plan was to give him the medicine to keep the heart rate low, and insert a pacemaker from keeping it from getting too low, or too sleepy.  He was having two extremes and they needed to find middle ground.

All along we couldn't shake the thought that the TT line could be causing all of this.  We knew it could be coincidental, but it all started when they messed with it.  In talking with the EP  he agreed that it could be the TT line but that SVT is also very common in Fontan patients and almost 50% of them develop it at some point.  We were bummed, but also curious as too why then... why 13 days out did this randomly start.  He agreed that the timing was odd, and a little far out, but said it could still happen.

The pace maker that would
get placed if needed.

So, Tuesday came and we met with the pace maker team, got all of the info, and discussed the options with both the cardiologist, EP, and surgeon.  And again, we brought up the question of if it could be the TT line, and if it would make sense to go the less invasive route first.  In the end, we said we would trust their expertise, but in my heart I knew I wanted to try the line first.  At first his cardiologist sided with moving forward with pace maker, and then later changed his mind and agreed to try the TT line.

YOU GUYS....I don't want to get too excited....but the TT line was pulled at 8am and it looks like we were right!!!!  It (most likely) was the culprit!!!!!!!  There is obviously a chance things could change...boy do we know that!!!  BUT right now the plan is to cut the medicine tonight and watch him a couple of days.  If everything is stable, we go home with NO PACE MAKER!!!!  This is a HUGE answer to prayer!  And a great reminder to always be an advocate for your kiddo.  I try hard to educate myself and listen carfully to what the doctors say.  I ask A LOT of questions, but honestly...it pays off.

Cute story, after discussing some of this, the EP asked what I do for a living.  Joe and I laughed and said I was a stay at home mom =)  He was surprised...and a little impressed.  I told him that I give them the credit.  They do an excellent job explaining things and I appreciate them taking the time for my questions.  It gives me a better understanding of my kiddo and his medical care, and that's really important to me.

So please join us in praying that his heart remains arrhythmia free!  I want to say we see the light again at the end of this tunnel...but the nurses warned us not to use the "H" word.  But for reals...we may be going "h word" soon!!!

Other good news...Stephen's new heart buddy got to go home today!!!  He is a precious 4 year old boy who just had the same surgery this past Thursday and ROCKED recovery.  He had a big bump in the road in the beginning, but then it was all smooth sailing!  These two were precious together!  Yesterday He taught Stephen all about Pokemon Go and they would then go on walks together searching for Pokemon...everyone LOVED it!!!   On their walk today they were greeted by some MLB umpires (the ones umpiring the Angels/Padres series down here in San Diego right now).  They are apart of a wonderful organization Umps Care Charities and they were passing out Build a Bears and outfits for the kiddos!

After a bummer of a day yesterday...today was like a breath of fresh air!!!

So all in all, day 16 in the hospital was pretty great.  We colored, played video games, hunted for Pokemon, had some dance parties and met some cool umpires!  

Prayer requests...

That we would ALL remain healthy and "rested" as much as possible. 

That Stephen would remain arrhythmia free!!!

For there to be no more setbacks...for reals!  

For God to be glorified through all of this.

I am tired.  I am happy.  I am mostly in a brain fog.  I am grateful.  I am thankful...and did I mention I am tired?!  Boy will we all need some recovery time once we finally go home!

Thank you all for joining us on this journey!!!

May the Lord continue to shine upon our Heart Hero!  

Day 14 & 15

The past 2 days have been busy, so for now this update comes without pictures.

Again things change daily, and for us it feels like we take one step forward only to take 2 backwards. We were hoping to go home Monday pending a good chest X-ray.  Well X-ray was great, but while he was sleeping Sunday night, his tachycardia picked up, canceling our hopes of home.  He had enough arrhythmia that they felt they needed to start him on a new drug to bring down the heart rate.

The plan was monitor it for 48 hours to get the right dose and the new best case scenario would be to get discharged Wednesday.  Well, Monday night he gave everyone a scare.  While the new medicine is meant to decrease his heart rate, it decreased it too much and it made his sinus node sleepy.  So he would go skip a heart beat for a second a few times,,,and then finally went 3 seconds...and doctors and nurses rushed in.  He was then hooked back up to the external pacemaker.  Ughhhhh....sense the deflation in my tone of writing =(

So, Tuesday came with talks of pace maker insertion.  We met with the EP and his team.  Saw the battery they will place, got the pamphlets to read, etc.  Good news, the surgeon already placed the leads to the heart during the Fontan surgery, sparing them having to reopen his chest right now.  Bad news...if he gets this pacemaker the leads last 5-15 or 20 years, so you are just guaranteed more surgeries.  I don't love that.  There is still an outside chance that the central line is causing all of this.  Enough so that one doctor is willing to pull it this morning and cut the medicine and see what happens.  Most likely we will still be scheduling another OR trip, but it may be worth a shot.  Who knows!  Honestly, they don't.  But I am so grateful his cardiologist for the last 6 years is on this week.  I trust him.  The surgeon asked him what the family will do and he said "they will look to me for the answer".  He knows us, I know him and I trust him.  That is huge.  So, if he says go right for pace maker, we will.  If he says lets pull the line first and see, we will go that route.  That will all be taking place (the decision making and possible line pulling, before 9 am this morning...so please pray!!!  Best case scenario is TT line is causing all of this and once its pulled he doesn't need to be paced or have extra meds.  I feel like the most likely case if we will en up on this 6th medication and get a pace maker...because that is how we roll.  He even told me proper for that and hope for the other...again...he knows my style!

SO please join us in prayer for wisdom and answers!!!   Will try to update soon!