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!

Day 5 & 6

Saturday August 4th DAY 5

Well...a lot has happened since I wrote last...ups and downs.

We will start with yesterday!  After the morning round we heard the WONDERFUL news that they were going to remove both chest tubes.  Honestly, I could hardly believe it.  They are pretty thick tubes and each of them is about a foot long once it enters him and rests on a very sensitive membrane lining his lungs...ouch!  That is why talking, breathing, walking etc has been SO painful.  And since they were not really draining much out they opted to just pull them.  Joe remained in the room...me not so much.  They gave him only morphine for the pain...so it still hurt...but it was over!

2 less tubes!!!

He then went on his first walk and it was a breeze!  He actually decided to walk the entire unit TWICE in a row!  While walking he even said "I am walking faster!"  He was amazing!  He went on 4 walks in one day...incredible!  Every time he walks I hide some new minifigures to find...a fun incentive!  One nurse wanted to tape one on her back...it was the BEST!  She walked infant of him and had some fun with it and when he finally found it he was CRACKING UP!!!  The nurses here are truly special!

This is some of the bounty from his LEGO mini figure hunts he does around the unit!

Chest tubes coming out made him a different kid.  All of the sudden he could talk, walk and even wanted to play.  So we finally got to dive into his amazing Bravery Box and build some LEGOs!

And the HIGHLIGHT of the day...his sibling visiting!!!!  Oh man I love these kids so much!  They all really missed each other.  By the end of the visit Audrey said she wished she could come back tomorrow so we made plans so it could work!

And with the help of Aunties and cousins, these kiddos made some yummy cookies for the doctors and nurses in our unit!

Stephen was finally happy to use some of his fun blowing toys I got to help expand his lungs..this was one of his favorites!  He can constantly rebuild it to be different shapes...and make noise!  So fun!

This cardiac unit is new since Stephen was born and the heart families were invited to help make the decorations for the unit before it opened.  It was fun to get to take the kids around to see the canvases they created!!!  

All in all yesterday went well...until the night.  I actually never got a chance to post yesterday because i usually find the time once he is peacefully sleeping and I have a moment to myself...last night that never really happened.  He was just not himself.  Emotional, and in pan and then out of nowhere his saturations began dropping to the low 80's an then the high 70's which worried me.  The dossiers weren't sure what was going on but were hoping a chest X-Ray in the morning would shed some light.  So they upped his oxygen form .5 liters to 3 liters and we called it a night.

Which brings us to today....DAY 5

I woke up to what I considered at the time to be devastating news.  Fluid had accumulated in the pleural space by his right lung and they were going to have to reinsert a chest tube.  I cried, he cried.  It just sucked.  I thought it was crazy they pulled them both yesterday but they couldn’t have foreseen this. At this point I was less worried about physical scars and way more worried about the emotional ones. I hate this. I hate seeing him hurt. I hate seeing him scared or sad...it stinks. Today I felt defeated. And then they tried turning his pace maker off and he was in sinus rhythm...thank you Lord!!! I needed that. I needed a step forward after one backward.   

The only thing that kept his spirits up, and brought a smile to his face, was talking about Make a Wish and that after everything he is going to go through here...he gets to have his wish come true!  This was his face when we talked about the magic of Disney World!  

We thought the procedure would be in the morning, but they wanted him to be NPO for 6 hours so we got the start time of 2pm.  Not ideal when our kids were showing up at 1 to be with him, but the thing ended up being pretty sweet.  Rather then shelter them from what was happening, they became a part of it.  They got to stay in the room while they did the EKG and ultrasound and even helped comfort him through it...which was so sweet!  Again, I wish I could easily upload videos because Lizzie put on music and danced all silly to make him laugh and distract him from what was happening. And then when he had to be more still Audrey sat beside him and read a book and Lizzie held his hand...melted my heart!

He wasn't in physical pain here, it was just an ultrasound to decide where to place the tube and the best place to go in with the needle, but he was emotionally spent and started to cry.  Lizzie told him to squeeze her hand...precious!

My kids are not perfect. They can be snotty and fight, but they deeply love each other. I think that love grew through watching Stephen and Lizzie go through so much. They have learned a level of compassion for others from all they have seen and gone through that is truly beautiful. They have the ability to understand perspective (to a degree) at such a young age. I have no doubt that these experiences will positively shape their souls as watching them have shaped mine ❤️





When I realized words like "needles" were scaring this cutie we threw on these awesome headphones and let him watch "The Greatest Showman" again...he is obsessed.  Joe remained with him until he was out of it, I had to leave.  The prepping of the room become too much for me...and I didn't want to pass out!

And then this below was him in recovery...you can see the drain working well in the bottom right picture.  

He almost immediately has about 10 ounces drain from the pleural space on his right side...which explained the low sats the night before and all of the discomfort and pain he was feeling.  Unfortunately in his world you trade the pain of fluid for the pain of a chest tube.  Although this tube is 1/2 the diameter of the previous ones where it enters his body, it still hurts!  He didn't get up for any walks this afternoon...and I didn't push him.  I figure he had been through enough!

The kiddos came back and brought him balloons and used the window markers to write him some messages, and by the time they left to go back up to Orange County he was fast asleep.

I then took that time to get away.  I finally ate dinner around 7:30 and then decided to shower. I just felt like I needed to wash the day away.  On the way back to the room I just still felt off.  Its been nearly a week and I have not really had any time to process any of this, you just sort of live it.  Even as I write now I don't have time to think really think about it.  There is no time to decompress.  So I paused to pray for 30 minutes outside in the fresh air.  Fresh air...something you miss being in a room almost 24/7.  It felt good.  I needed it.  And on the way up I ran into a wonderful nurse who took care of Stephen during the time of his first surgery and it was just perfect.  I needed that.  I needed all of it.  A little escape from the day, a little boost, a little encouragement, and I walked back into his room refreshed and ready to go.  Here is to praying day 7 is even better!