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!

Day 4

All in all today was a good day and we saw so much progress!  He was talking a little more, smiling a little more (even giggled a few times) played a little more, ate a very little more and was awake quite a bit more!  It is all baby steps...but baby steps in the right direction.

His chest X-Ray in the morning showed quite a bit of improvement from the day before (yay) and we are praying it stays that way.  Clear lungs are good!

The day started with a visit from his Kaiser cardiologist, Dr. Levy.  I was seriously nervous when we switched to Kaiser, but have been completely impressed so far.  Dr. Levy is amazing and can already tell how much he cares for his patients.  He called to check in the day of surgery, yesterday, and then came by to see him today.  I was blown away.  We loved having Dr. Davis for the past 6 years, but we enter this next chapter so grateful knowing he is still in great hands!

When Joe told Stephen he was going to walk and get coffee he said he wanted a vanilla steamer.  Stephen is on a low fat diet for now (maybe for the next 4-6 weeks) and so he can only have between 30-50 gram of fat today.  But since steamers can be made with non fat milk the nurse gave us the ok...and he was pretty happy about that!

He got his pain meds at 10am...so we made sure to do his first walk shortly after to make it easier!  He got to go on another LEGO mini figure hunt around the cardiac units.  It is not easy.  This chest tubes are no joke.  They are large and long and hurt.  But he pushes through it like a true fighter!

Trying to search for the next figure!  

Pure determination!

Found one!

We came back from the walk and the plan was to give him a "bath" with wipes.  As he was trying to wait patiently for the wipes to get there he was in quite a bit of pain from just walking a large lap and then having to sit up...sitting up hurts...chest tubes hurt.

This boy...this is how he deals with the pain. He doesn’t really cry, he doesn’t complain, he just shuts his eyes and internally copes. Nurses and doctors would always ask “how are you?” And he would reply “good” and just after wince. We learned we needed to read his cues. When he shuts his eyes it hurts (or he’s tired!) And we learned to ask specifically if it hurts, not “how are you?” He is so tough. So you know when he gives a little cry (which I think he has only done once) it’s pretty bad. And he bears all of this so well at just 6 years old! 
As his Mommy it is so hard to watch, yet I am so proud of him. I wish I could take all of this away. I wish I could carry this burden and this pain. But I am grateful to know God has and does carry it with and for him. I know he will use Stephen’s life and story in mighty ways. Immeasurably more is what I have come to expect from God. He takes these pains and these burdens and brings immeasurably more beauty and light to this world and our lives. This child is such a blessing and I am so grateful to be his mom 

❤️

After the bath I accidentally sat on an extra wipe that was on the bed and my pants were all wet...he thought that was hilarious!  He would smile and laugh but then shut his eyes because the laughing hurt!  Still...the smiles were sweet and it was good to hear those little giggles!

The Angels played at 4 and he was all set up ready to watch.  This was the first game he was really able to watch.  He tried before but would fall asleep...but he stayed awake the entire game and this time they WON!!!  He was a pretty funny commentator.  When the replacement center fielder let one go over his head he informed us that he wished Mike Trout was in.  And he got frustrated when the Indians tied it up with no outs.  He is serious about his Angels baseball!

Watching the game with his buddy Mike Trout!

We had to take a small break during the game to take on last walk of the day.  It was a little shorter this time but he got to sort his new LA Kings gown...and find some pretty cool Star Wars mini figures!  His new collection is growing! :)

And lastly, as he was laying in bed he said "I wish I could talk to the kids".  This made me so happy!  Before today he really wasn't saying many words.  He still really isn't saying too much, but he has small conversations with us.  So when he was willing and wanting to talk to the kids we FaceTimed them and this was the reaction from all involved!  So precious!!!  We are all excited to have them come visit tomorrow!!!

Major prayer request is for his rhythm to return to normal.  God is able and let's just keep asking!  

And pray that he would remain strong and healthy as he continues to heal.  Over the next couple of days more lines and wires may be removed and with that always comes risk of infection.  Please continue to pray for what we consider an "uneventful" recovery!  

Lastly, I just want to once again say THANK YOU!  I spent tonight re-reading through every comment on FB and was so encouraged by the sheer number of people praying for Stephen.  I am humbled and SO grateful!!!

Day 2 and 3

I wish I had the time (or energy) to put my thoughts and emotions in written word right now.  I have seen and felt so much.  But honestly, the days are long and given fully to my sweet boy, and the nights...well my brain just doesn't work!   I thing I have got around 8 hours of sleep the last 3 nights combined!  It is amazing how God gives you the strength (and energy) to get through the valleys.

A lot has happened since Day 1 and it is best shown in pictures =)  I need to figure out how to get the videos up...but until then, here is Day 2 & 3!

DAY 2 (Wednesday August 1st)

At 6:30 am Wednesday they got him into the chair to sit.
This really helps drain the excess fluids in his body after the surgery.  You can see how tired he was from that move!

He really couldn't talk much (still doesn't but it is getting better) so he said
"when I open my mouth that means put ice in it".  And for much of the morning
 (before he was allowed to drink) he would just open his mouth...it was pretty sure!
Once I missed the signal and got a "mom!" it a quite, but quite serious, tone =)

A sweet, unsolicited, smile!!!

HIs first popsicle...EVER!!!  He is a funny kid and has NEVER liked popsicles.
BUT, he wasn't allowed to eat or drink...so he gladly ate this!

Just before a little sponge bath!  To explain the wire/tubes.
The top right circle (you can see well in the picture above this one) is a TT line (trans thorasic) that goes right to the heart.  It will stay in until we are ready to go home so they can pull blood work from it instead of poking him AMAZING!  He also had a central line in the left side of his neck which was removed in the afternoon on day 2 (Wednesday) but can be seen in the other picture as well.  Nasal cannula to supply oxygen ( I think as of today it was down to 1 liter).  Little white circles connected to wires are leads that show heart rhythm etc.  The white boxy thing to the right of his belly button is the temporary pace maker wires which are currently hooked up to an external pace maker that sits on his bed and is fully pacing his heart (he has a junctional rhythm if not).  You can follow the wires form the white part to where they entire his skin to his heart.  Directly under his chest bandage and to the right of the pace maker wires are 2 chest tubes to drain all of the excess fluid in his system.  On his left hand (but right side in picture) he has a peripheral IV in top and an arterial line (which was pulled out today!!!) to the side.  And on his right hand he currently has another peripheral IV which they tend to use to administer some of his pain meds.  It is quite a bit of stuff!  But it is amazing watching each one come off!!!

This is one of my favorites!  His smiles are still few and far between, but this one was the best!
We had just set up his bed and told him the Angel game would be on soon!!!  This was his reaction!!!

And then this was how he looked during the entire game!  Poor guy was EXHAUSTED to say the least!!!

His wonderful cardiologist form Rady's (Dr. Davis) stopped by for a short visit to check up on him.
We truly were blessed to have him on our team these past 6 years!

And then he went back to snuggling his Mike Trout doll and sleeping!

Not much happened Day 2...mainly a LOT of sleeping!  He did get up twice and sit in a chair for a few hours...but that was the extent of it.  

DAY 3 (Thursday August 2nd)

Today was moved from the CVICU (Cardiovascular Intensive Care Unit) the cardiac step down unit...a VERY good sign!  One of the Pas said he was hands down the BEST patient she has ever seen 2 days after the Fontan...PRAISE JESUS!!!  It is hard to believe its only been a little over 48 hours at this point since he came out of surgery!

He has defiantly won the heart of his nurses.  His nurse in the CVICU was sad to see him go (and wanted to go with him) so she came by and visited through the day =)  

The other big accomplishment today was walking!  The first time was hard to watch...he was in so much pain.  But he did it!  They actually has to slow him down.  He knew he had to make it once around the pod and he just wanted to get it over with!  I did a mini figure hunt to try to make it less painful..didn't work so much the first time around...but the pictures can show you that...

Working through the pain.  Such courage and such strength and such a young age.
Open heart surgery hurts.  It just does.   And the most painful part is the 2 large chest tubes (they get smaller then the part you see in the picture) that enter in above his belly and basically sit on a sensitive lining of his lungs (pleural space).  I can't even imagine.  I am not sure I would tolerate the pain as well as he is.  But grateful for God's provision through it all!

And then when he returned for that walk he was OUT!  

And I still can't get over those sweet PINK lips!!!

The 2nd walk went SO much BETTER!!!  I have a better video to show it (but don't know how to get it on here).  He actually smiled and giggled a small but as he spotted the mini figures.  The first round had Star Wars figures and this one had some Ninjago...he gave a little laugh when he found Lord Garmadon!  He even walked through all 3 cardiac pods this time...so a much larger loop.  He stopped once for a little pain, but overall tolerated it SO WELL!!!  He is still a bit too exhausted to do much of anything.  He couldn't even put his figures together yet, but that will come with time!  And he does have quite the entourage for these talks!  One nurse has to be in charge of his oxygen tank, 1 has to hold his chest tubes drainage tanks, and the other has to maneuver his IV pole...and then Daddy of course holding his hand =)

Side note...the male nurse on the left is a Boston Red Sox fan...we still liked him though =)

Overall day 3 was a big day.  He made it out of the ICU and went on 2 walks (HUGE) and even ate a little chicken and about 12 pretzels (compared to the 6 saltines from yesterday).  

Also...huge shout of of thanks to all of those who have sent us Uber cards...they are coming in SO handy!  It is not easy being gluten free at a hospital.  Most meals at the RMH I can't eat so today my one and only meal came from a wonderful Cuban place we found.  This picture doesn't do it justice...but oh my word it... was delicious!  And delivered to the hospital for us...AMAZING!!!

Main prayer requests now...

That his heart rhythm would return to normal.  At this point it feels like it would take a miracle...but we know that is possible.  The first 2 days they seemed confident it would, today not so much.  There are a lot of reasons why they are thinking this, and I get it.  With the way his specific heart is set up we were told for day one (like in the womb) that he had a higher chance of needing one put in one day.   Still...lets pray his heart can beat correctly on it's own!

Pain management.  Stephen internalizes so much of his pain.  Rather than speak u he just shuts his eyes and tolerates it.  It can be hard sometimes to know if he is sleeping, or just huts.  Pray we can stay on top of the pain so his eyes will be open more!  

He did develop a pleural effusion (excess fluid built up around lung) so pray that it would drain quickly and go away without causing any trouble.  These are very normal after this surgery, but can leas to lengthy hospital stays and difficult edit restrictions!  

Rest for both Joe and I.  Sleep doesn't come easy when this is your current reality.  But prayers that we would remain healthy and somewhat rested is appreciated!

Thank you all for waking this journey with us!!!  We appreciate your prayers SO SO SO much!!!!  God is good and we know he will use all of the this for His glory!

PS  If anyone wants to text, message or email encouraging videos for Stephen I am sure he would LOVE them!  We showed him one today and it lit up his face!!!  

Day 1 in Pictures...and a few words

I am entirely too tired to write much, but I have so much to say.  So for now I will sum up the day with pictures and a few words.

Our smiley boy walking over to the hospital!

Pre-op saturations...you can see the 72 on the left of the screen!

Going through Pro-op like a champ!

He was wheeled away into surgery just before 1pm...not my favorite part.  It is so, so , so hard to watch your baby  go.

He came back intubated (on breathing machine) which is normal.  We finally got to see him at 8:30 pm.  Surgeon said all went well.  They did decide to place some permanent pace maker wires inside of him so if (or when) in the future he needs a permanent pace maker put in it will now NOT have to be an open heart procedure...pretty amazing!

His oxygen saturations after surgery...96!  

He took a bit longer to wake up...but that has tended to be his norm.  He is VERY sensitive to sedation meds!

Finally extubated and breathing on his own!  You can see to the right of his neck he has a TT line that is sutured in and goes directly to his heart (theres one on the left side as well)  His bandage looks great!  He has 2 chest tubes, and in between them are the temporary pace maker wires (which are currently hooked up to an external pace maker and are completely pacing his heart while he in in junction.  His left hand also has an aerial line and his right a peripheral (that is capped off)

You can see how pink his lips are though!!!

Such a long, emotional day.  Still a long road to go.  But praising God for his protection over sweet Stephen!!!
Please continue to pray for a speedy and uneventful recovery.  Pray his lungs would remain clear and that his heart would return to normal rhythm.  And pray for his pain management...moving hurts...and he has to move!
Bless you all!

Just Went Back...

Stephen was wheeled back into the OR just before 1pm (slight delay in schedule).  Please pray that the Holy Sprit would fill that room, guide the surgeons and team of people working on him, and be with our precious boy.  The surgery should take about 5 hours, and we will hopefully be able to see him a couple hours after that.  Prayers over these next few hours (day) are greatly appreciated.