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!

Day 13

August 12th

Oh man...the days are getting longer!  At first they were flying by and now they seem to take forever! I am assuming it has to do with how tired I am...pretty sure thats the culprit.  Hospital life is a whole different type of tired.  I mean you don't get the best sleep for sure, but you also don't move around much.  I literally spend 3 minutes total outside on the average day.  A minute and a half walk to and from the Ronald McDonald House...that's it.  And it is ok.  There is no where else I would rather be right now.  Fresh air can wait :)

Today was a hard day (but a good day) for Stephen.  It began with getting his chest the pulled pretty early!  X-ray was clear and they felt confident to take it out!  I can't handle being in the room for that stuff, so the kids and I went on a little walk and found this cute little outside play area while we waited.

After the chest tube was pulled they had to change the dressings on his TT line...he hated that more than the chest tube removal itself =(  And to top off the hard (painful) morning they couldn't get labs from his TT line so they had to poke him =(  We had them use a lidocaine patch so he wouldn't feel it, but emotionally he was spent, so tears were shed.

Luckily...he got over it and enjoyed playing some video games! And the highlight of the day for me was this bare face!!!  This made me SO happy!!!!

HIs siblings also had a very eventful day!  I got a call from the RMH on the morning saying they had 4 tickets available for us to see the Padre game in the OWNERS SUITE!!!  I mean, we are HUGE Angels fans, but we also just LOVE baseball and couldn't pass this up!  So Joe got to take the kids to the game and I stayed back and got to love on Stephen.  They had a blast!!!  They got to meet the wonderful, and very generous, owner and his wife.  They had incredible seats, were given some nice hats, and here was a chef in the suite and all you eat food and drinks...VIP treatment!  They even sent Joe back with food for me, and a swag bag for Stephen since he couldn't be there...so extremely thoughtful.  And once they fond out we were Angels fans they offered tickets to any of the next 3 games when the Angels are in town!  If we are still in the hospital tomorrow Joe will be taking the older kiddos =)  I asked one the the NP's how soon is too soon to go to a baseball game once Stephen busts out of this place.  She said he should be cleared after his week follow up...I said "so probably not Wednesday?"  and oh her face...it was pretty awesome.  I mean, it doesn't hurt to ask right?!

So, there is a chance that we get to go home tomorrow...but I am not getting my hopes up yet.  They are going to treat it like we are and make him NPO staring at 2am b/c he will need to be sedated for them to remove his central line (because it goes directly in his heart!).  They would then keep him for a few hours, do a repeat ECHO, chest X-ray and labs and if all look good we are out of here!!!

That being said...he started having some strange rhythm issues this afternoon and they have seemed to increase in the night.  He keeps having asymptomatic (no signs other than the monitor shown) tachycardia (fast heart rate...up to 190 just resting!).  The cardiologist didn't seem too concerned about it.  Even thinks (hopes) it is the TT line effecting the heart.  But either way it needs to be watched/monitored.  This cold keep us in an extra night...and I almost hope it does!  I don't want to go home with any potential problems.  So prayers for this speedy heart rate to stop would be wonderful!

We are close!!!  We are so VERY close!  I know things can change in a blink of an eye, but for right now I am just grateful to have made it this far without any major bumps in the road.  There have been bumps, but compared to other situations, I would take these hiccups!  

And now, I am officially tired and heading to bed.  We hopefully have a big day ahead of us!!!!

Day 12

August 11th

Today was one of the more exhausting days...but that is just because we had to juggle all 4 kids!  Seriously...I usually don't fall asleep until midnight but I am about ready to conk out at 9!  It was SO worth it though!!!

The morning started with the news that his chest X-ray was clear!!!!  Praise Jesus!  They could have pulled the tube today but I appreciate the caution after what happened last time.  So, if it is still clear in the morning, the tube is coming out!!!  I don't know if I am excited or nervous!  The last time we tried this it backfired...so lets just pray this time those pesky effusions stay away for good!

They also turned off his external pace maker and disconnected him from the box (the wires are still on him ready to go if needed).  This is pretty huge.  If the tube comes out tomorrow, and he remains in sinus rhythm, there really isn't much keeping him here!  Honestly...at that point we should be home by early/mid next week!!!  I don't want to get too excited...but for real... the end may be in sight....YAY!!!!!!

The Top is today's X-ray (with a color coded explanation of what is inside of him, the right was his X-ray 2 days ago...much cloudier and on the far left you can see like a hazy white line that goes up and down which is part of the effusion.

Color Codes...

Blue is the pigtail chest tube

Yellow is his transthoracic central line that goes straight into his heart

Green are the coils they placed in his collaterals during the cath lab back in May

Red are the permanent pace maker wires they placed and coiled up just in case they need them one day.

And I should have colored coded the temporary pace maker wires but if you look to the left of the spine you can see small wires leading out.  Those are what have been attache to the external box that was pacing his heart =)

And lastly in the center you can see the 7 wires that were used to close his sternum back up.

So Stephen had A LOT of visitors today...more than the normal mom and dad ;)

Not only did he have his siblings, but Gracie the dog came to visit and so did Wade & Beatrice!!!

It most definitely felt like a long day, but it was a good day!  And it ended with a a nice little wipe bath and a baseball game on TV =)

Please continue to join us in prayer for his complete healing.  It will continue even when we go home!  But for now we are SO very thankful for these answers to prayer!  With that said...I am tired!  And I am going to crawl into bed and maybe even be asleep before 10!  WooHoo!!!

Day 11

August 10th

Well, like I said yesterday...things can change in a day!  Today he barely drained anything from his tube.  I am cautiously optimistic.   The chest X-ray from this morning showed no effusions and he had barely any output...though enough that you wouldn't think it was clogged.  Again...cautiously optimistic...the extreme optimism will come with another clear X-ray in the morning!  

Best news...he is still in sinus rhythm!!!  What?!!!!!!!  I mean look, I know God is able to do big things.  I know that when doctors give a 25% chance He can make it 100%...but that just isn't always the case.  It is not that I doubt his ability or his love... for that I am certain.  It is just I am used to a harder road and have always just been a hope for the best but expect the worse kind of a gal.  So when doctors are telling me they have a spot in the OR tomorrow and that sinus rhythm usually comes back sooner or doesn't really come back, I prepare myself.  

And again, he could still end up needing a pace maker inserted before we leave, or later in the future, but for 2 straight days he has been in sinus rhythm...hallelujah!!!  And for that we are THRILLED!!!!

So day 11 in pictures...and some words!

We started the morning off with an ECHO.  Wait back up...we started the morning off with LOTS of beeping.  OMG...I am sick of monitors.  But, after all the beeping and no sleeping, we started off with an ECHO.  I did not hear back any results, but in this life, no news is usually good news.  

Stephen has been pretty addiment about keeping his chest covered.  We haven't talked about it too much (I try to let him lead) but he just doesn't want to see all of the stuff going on there...and I don't blame him!  But this morning the gown had to come off for the ECHO and for the first time he seemed pretty OK with it.  He even showed his nurse how his Mike Trout doll has a matching heart hero scar like his...precious!!!   

We also went on one LEGO hunt today and one "dance walk"  On his first LEGO hunt one of the nurses tapped this guy to the ceiling...Stephen cracked up when he found it!  And another AWESOME nurse gave him a little hair do ;)  The staff here are the BEST seriously...so blessed by them =)

After his walk he was SPOILED by child life bringing in a Wii for him to play.  Listen...I usually keep the screen time to a minimum at home, but his kid just had open heart surgery at 6 years old...so I let him have at it for like a good couple of hours!!!  He played all sorts of games...but I think he had the most fun being Philip Rivers with this Madden NFL game!

He played until he tuckered out and ended up with a late afternoon nap in the chair!

I just have to say, for being 11 days post open heart surgery....this kid is rocking life!  He had ZERO pain medicine today.  Yes...zero.  I know for a fact that I would not handle this half as well as this 6 year old is!  That is actually one reason almost every nurse has told me as to why they choose pediatrics...adults complain too much!  But these kids...they go through SO much and still find joy amidst it all.  It is inspiring!

I honestly still haven't has much time to process much of anything that has happened.  It will all hit me one day, but for now I just stay strong for my boy!  However, yesterday as I got in line for dinner at the RMH it hit me and I fought back some tears.  And then looking on Instagram of the night of the surgery took me back a little.  It is strange.  During his first 2 surgeries I had time to cry and reflect because he didn't need me as much.  This time is SO different.  He needs me.  He needs me to be there and be strong.  He needs me to smile and dance and find the same joy he does.  He needs me to not make it scary.  He needs me to not have a worried look or voice.  This time there is much less "me" time and that is OK.  The time will come when I will look back and say "what just happened?!" But for now I will remain content to be there for him.  To be strong for him, not because I am strong, but because God is.  

So I too am trying to be a little more like Stephen. To be joyful in all circumstances...because man...my six year old lives that out daily! 

Please continue to join us in prayer for the rest of his healing!  Our God is mighty, our God is able, and our God is good.  

Jesus, we trust in you!!!