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!!! 

Day 10

August 9th

Well, we made it into double digits and it doesn't look like we are going home any time soon.  But that its the tricky thing about this type of recovery, it can change in a day!  Back up to last Saturday...Stephen had hardly any output from his chest tubes the previous days that they felt confident enough to pull them both.  Overnight things took a turn and a drain was replaced by Sunday afternoon.  The pleural effusions keep coming and going with no definite answer as to what is causing them other than it is a typical side effect of this surgery.  We were excited when he had very little output yesterday (50mls total) and was dry overnight...but that excitement ended with a bad chest X-ray.  It turned out the tube was clogged which caused a backup of fluid, and when they got the clot to move today, over 250mls came out =(

As for the pacing, it has been going back and forth.  Today he spent almost the entire day in sinus rhythm on his own!!!  Praise God!!!  BUT that doesn't mean much when it goes back and forth.  We had one of the docs from the surgical team come and talk to us.  They wanted to know how we were feeling about the permanent pacer and gauge where we were at with it.  Obviously we are going to defer to their expertise, but I want to be confident in our decision.  If he keeps going back and forth he will need it no doubt.  If he can have a few days without leaving sinus rhythm I would feel more confident in holding off for now.  When I asked how soon they could do it she told me they are holding a spot for tomorrow, or can do Saturday or even Monday.  Ughhh...I am not ready for him to go back into the OR yet!!!

And the hardest part is just not knowing why it is doing it.  The pacing issues could be causing the draining issues, the drainage issues could be causing the pacing issues...so which one do you try to fix first?  Please, join us in prayer for wisdom.  Pray for his surgeon and his incredible team of doctors.  Pray that they would have insight into the best solution and that both Joe and I would have peace with it.  We really love our surgeon!  I got to thank him again for his care and concern as we stopped and chatted in the hallway.  I asked him if he ever takes a break...he is around A LOT!  But he was honest and said that when you have a complex congenital heart case like Stephen's you just can't stop thinking about it.  He actually came into the hospital at 5 am after the original surgery because he could't sleep and wanted to check on him.  That is how much he cares about his patients!

So as hard as it is to be in double digits, I am grateful that his days are getting better.  He is a CHARMER!!!  I mean how can you not fall in love with this kid?!!

I was showing our new nurse a picture of all the kiddos and with that showed her a picture of his lips before this surgery.  He asked me to take a picture so he could see his lips now.  I took the one below and he said "Oh yeah!"
I mean look at the difference...

Today was another great day for Stephen.  He was in little to no pain.  He only took Tylenol once and is on no other pain medications.  He went on 3 walks, sat in a chair most of the day watching a movie or playing and the cutest thing ever...he went to the play room (for the first time) with his new buddy and played musical instruments together!  It was beyond precious!!!

We ended the day tucking in Mike Trout and Karen (a gorilla from the San Diego zoo who had heart surgery!)

Tomorrow Joe will be going un to Brea for a training at his work so it will be my first day flying solo.  Please pray for it to go smoothly.  I would love for it to be uneventful!!!  And the best part, he will be bringing our older 3 kiddos back with him to stay a few nights with us at the Ronald McDonald House!!!!  Stephen is SO excited!!!!

So recap on prayers requests...
1.  Drainage to stop
2.  Pacing to resolve itself...or wisdom for both the doctors and us on how/when to move forward
3. Tomorrow to be uneventful as I fly solo
4.  Continued peace, comfort and strength for our little man!

And Praise God, Stephen has been through SO much yet he is still joyful...that was a HUGE answer to prayer!  I didn't want this hard experience to rob that joy from him.  So we thank God for his contagious smile and laughter...and those awesome dance moves!!!!

Day 9

August 8th

Today was probably the BEST day since last Saturday when the 2 chest tubes were originally removed.  He woke up smiling and wanting to play.  He finished off a sticker book and built some LEGOS before we went on our first walk of the day.  Along the way he got to say "hi!" to his friends and he got to meet one of our favorite neonatologists who are for him after his first open heart surgery.  It was precious watching them hug!

He also saw one of our favorite nurses and had an impromptu dance party in the pod!  Walks now a days are even more fun.  Not only is he hunting for LEGOs but he is being cheered on by so many nurses and doctors that have got to know him over the past 9 days.  We appreciate these people so much!  No one wants to stay in a hospital, but they make (dare I say) fun at times.  Where you forget everything for a brief moment and just bust out moves to DJ Shuffle.

All in all Stephen had a GREAT day emotionally, and he looks great, though I am still not sure where we are at medically.  The pacing of his heart is confusing and they mentioned needing to have the electrophysiologist take a look at it.  Please pray that it is not starting to cause a bigger problem.  At this point just junctional rhythm sounds better...

That being said we are I guess in a but of a stand still.  If output in the chest tube remains low they may pull the tube in the next day or 2.  Altogether I think it put out around 50 ml and the surgeon mentioned anything below 100 was good. Though I would prefer a confident 0 before removing it since I REALLY don't want to have to reinsert anything AGAIN!  And there is no set plan yet for a pacemaker, though I am assuming we will have more of a plan in the next day or so.  At one point we heard them talking out side the door about Stephen's case and they mentioned "he won't be going hoe any tie soon."  What is soon?  Days? Week? Weeks?  I mean to word is relative for sure!  My guess is we have at least a week left here...maybe more...but I will pray for less.  

At this point I am just SO grateful that he is HAPPY!!!  I LOVE his smile, it lights up the room!
 

And tonight out AMAZING night nurse gave Stephen another bath...it is so goo to see him clean! And for a brief moment I got to see his sweet face without the nasal cannula...oh how I miss a sticker free face!

You can tell he was SO comfy after getting cleaned!!!  Hoping for a wonderful night rest tonight....for ALL of us!

Trying to see if I can get these videos to work...but this was the bedtime dance party!

And this was from his first dance party of the day!

 Our prayers requests remain the same.  Prayers for rhythm, health, and healing!  Thank you!!!

Day 8

Day 8 

Tuesday, August 7th

Well this stay has most definitely been full of ups and downs, and praise God are downs really are not that bad.  They are hiccups and bumps in the road but so far nothing major.  This mornings chest X-ray showed more plural effusions (the build of of fluid in the cavity between his lungs and chest bone) but he wasn't draining very much.  So, they tried flushing the line and then pulled 90 mls out of him!  Seemed that the chest tube was a little blocked, but now it is fixed and working again... which is a good thing!  

All snuggled up after the shivers

His blood work also showed his IgG levels (am antibody that helps with immunity) were low due to the drainage so they wanted to help replenish it with an IVIg (an IGg product from human plasma) treatment.  The reasoning for this is to lower the risk of infection while his numbers are low (please Lord let us stay infection free!!!).  Unfortunately, with blood product there is always the risk that the body will react and reflect...which Stephen did.  They preventatively gave him tylenol and Benadryl before the treatment, but about a 3rd of the way in he began to shiver uncontrollably =(  They then had to stop the treatment and give him an extra dose of Benadryl which put him right to sleep!  

At this point I honestly don't know how far out we are from going home.  I don't think the doctors know either.  We were on track for getting out of here quicker than expected when the first pulled the chest tubes on Saturday, and now if is looking like a minimum of another week.  From what we can tell the first thing that needs to happen is to get these pleural effusions to stop.  They added another medication to relieve some of the pressure in the Fontan to see if that helps.  If they exhaust all means of mediations, diet, etc then the last resort is a cath lab procedure.  We are by no means at that point, but we are aware of the possibility.

Then there is the question of the pacing.  His old cardiologist, Dr. Davis, stopped by again and I asked him his opinion on the percentage that he thinks it will get placed this visit.  He said we are at about a 75% chance he will need it before we can leave...boo!  I mean, again, it is not the worst news in the world, but it is also not the best.  It is obviously better to not need it, but is better to have it if it is needed. That would then mean another surgery (praise God they wouldn't have to go through his sternum again) and more healing/recovery time...though it should only tack on a few extra days in theory.

Walking the birthday girl her balloon

So that is where he is at physically.  Please, please , please pray for him to remain free form infection this entire stay, but especially right now with his immune system compromised.  And continued prayers for these effusions to leave and for his sinus rhythm to come back and stay!!!

Aside from the physical side of things, today was a good emotional day for our little guy.  He woke up smiley and playful.  He did SO great on his first walk.  It was actually a little girl in our units 5th birthday and he wanted to deliver her a ballon so I went down to the gift shop and bought a pretty awesome unicorn!  He then walked it over to her and we wished her a very happy birthday.  Later on, during her walk, she stopped by to say hello.  These kiddos sure are precious!!!  So if you think about it pray for sweet little Mags too!  She has already been here for 3 weeks and we are praying she can go home soon!

Stephen still isn't too up to playing with toys, but has been able to get some new apps and play games on his tablet and watch movies.  We are letting him dictate what he can handle, but you can tell this chest tube is a big pain.  On our previous LEGO hunts in the unit he would be able to reach out and pick up the figurines...now he just lets us know where they are and we get them.  But he still loves hunting for them...so that is good!  I actually just had to order a few more and have them sent to the Ronald McDonald House b/c he gets a new one every time he goes on a walk...and then he when he is feeling really good he keeps asking to walk and I was running out of new ones!  But I am happy that they are helping him to get up and move that fluid around!

Due to the late afternoon Benadryl nap he just fell asleep at 11pm...so I am going to wrap this up and get some rest myself.  Continued prayers to remain infection free, for pleural effusions to stop, and for his heart to pace itself would be wonderful =)  God is able!

Day 7!

It is hard to believe that yesterday marked 1 week!  

Monday was relatively uneventful.  He went for his first walk with the new chest tube in the morning and it was heartbreaking.  It hurt so bad =(  

They then put him back on some better pain meds and he ROCKED the second walk!!!!

Such a HUGE difference!!!

It is not easy seeing him suffer or be in pain.  It is the worst.  And a week into his stay here he is getting a little more emotional about anything happening to him.  Last night all it took was the nurse wanting to bath him and he cried...ughhh.  Or when they have to peel off a lead to place a new one.  You would think they were poking him.  It is not taking much at times to just make him cry.  And mind you this is a Stephen cry.  It doesn't last long, but still, for him to get to the point you know he is DONE.  He isn't one to whine or complain (I should take a lesson from him) but rather he is usually joking and laughing and just being silly.  So when his true personality pokes through right after it lifts all of our spirits!

Yesterday morning was one of those times.  His nurse Gregg had just got on and he came in to introduce himself.  Stephen kept his eyes shut and pretended to be asleep so he wouldn't mess with him.  As soon as he closed the door he yelled "Boo!!!" to Joe and me...it was hilarious and so precious!  It is times like these we cling to.   

Every day we have emotional ups and downs, all three of us.  That is just how hospital life goes. But we are never in despair.  We have too great of a hope to put us there.  And at times when we are too busy to pray because we are caring for Stephen, or too tired because we are just exhausted, it is wonderful to know that somewhere, someone is praying for him and for us.  Thank you for being a part of that team.  Thank you for lifting us up when we can't.  We are grateful to share this journey with you, to share our lives with you.  And we pray that you too will be blessed along the way =)

We ended the night watching the Angels win from the hospital, while our older 3 got to watch it from the stadium!!!  This kid and his Angels baseball...let's just say it is talked about A LOT around here!!!

I will have some more to update from today tonight...until then, blessings!