Thursday before I could make it in to the hospital, Joran had music therapy.  Two girls with guitars came and they played music and sang with him.  Jeff said he loved it.  They left some maracas with him.  This is Necia doing her music therapy after we got there.

 Here is Joran.  Look how good he looks...remember this is Thursday..not now.  Necia and him are just chillin.

 This is Joran with Liz.  She and Jeff took Joran on an adventure Thursday after lunch.

 Joran rode in the wheelchair out front and then walked with a little help around by the fountain.  He took off his socks, rolled up his pants and waded in the fountain.  He LOVED it!  They took pennies and made wishes as well.  Joran then walked all the way around to the ambulance entrance (ER) and back...that is a super long way!  He did awesome.  A little later mom, Joran and Liz went again..so grateful he had a good day!

 Here he is holding Necia...a huge benefit to being on the "floor" - mom and Necia can be in the room with him.  He missed his little sister so much and just wanted to hold her all the time.

Friday morning he went it to get chest tubes places.  The x-rays were showing a lot of fluid behind his lungs.  His tummy started looking like he was from Ethiopia and when you touched his belly he hurt.  This was done in the Jazz room.  The outer doors look like the Jazz bear coming out of a locker.  Inside the wall mural is life size action shots of  Eaton, Hornacek, John Stockton, Karl Malone, etc  They have autographed photos around the entire room.  There is also a display case with signed shoes, jerseys, balls, etc.  Joran was having some anxiety about this minor surgery, so the tech opened the case and pulled out Al Jeffersons shoe...size 18!  It was huge!!!He thought that it was pretty cool..Jefferson wore them for one game, signed them and gave them to the hospital.  This is where we take a turn for the worse.  The chest tubes were causing him a lot of pain when they brought him back to the room.  The pain in a way paralized him and he wasn't hardly breathing.  His arm was also getting really swollen.  He was medicated and moved back to the ICU where he could be monitored more carefully....it was a circus.  We were mortified and he looked terrible.
The music people came and found him.  He was in no mood to play...he was in so much pain and it just broke my heart.  They sang for him and his breathing slowed and he fell asleep. 

 Here he is Saturday morning.  He looks so much better!  He has drained over a liter of fluid off of just each side of his chest.  I guess it would hurt to carry around  a 2 liter bottle on your insides.  Annicha and Maren came for a visit!

 Boston came to tell him what has been going on at home since he has been gone.  Connor and Cheyenne  had to work.  Sierra stayed with me all of today (Saturday)  We sent Jeff home with the kids to mow the lawn and get a few things done at home-he hasn't really left Joran since the 17th.  He is on his way back to switch me out for the night.  Sierra sat with him on and off all day when I needed to be with Necia.  It was a good day!  Joran made some progress and we are hoping when the cardiologists come in Monday they will have figured out what is causing all these problems...if you notice his arm it is huge!

 Here he is right before I was leaving for shift change.  When Jeff gets here they will be going outside for a little while...this time in a wheelchair only.   The chest tubes still cause a lot of pain when he moves.  We are hoping he will feel well enough to join us for church at the hospital in the morning.

Tuesday-Wednesday

 This is Joran's nurse Michael...we had him for two days actually.  He was the only day nurse we had two days in a row.  Joran really liked him.  He could push Joran in ways the other nurses couldn't. 
Tuesday was spent trying to get Joran feeling better.  He couldn't keep much of anything down which.

He had Grandpa and Grandma Johnson visit on Tuesday- his pioneer activity of the day walking...how appropriate!
We also found out on Tuesday that he had a blood clot-sortof.  It was in his left side-which is odd since everything was on the right side.  Anyway, his left arm started to swell so they did an ultra sound and found a  coagulation in an artery.  He had to start blood thinners.  This would have been fine except for the fact that they are given by injection in his stomach twice a day for three months.  I didn't handle that very well.  He got permission to have them in his thigh, but for a kids who is terrified by needles this just isn't fair.  By the way, when he comes home, we have to give them to him ourselves...JEFF????

Wednesday was a much better day for Joran.  He played Bingo with the other kids in the hospital (via TV) and they called in a few jokes!  He totally loved that-thanks for letting us know about that Tesch's.  Jeff and I spent time reading with him that morning-mainly from a joke book.  It was so good to hear him giggle.  He and Michael were having a "gas" contest.  This made me laugh (and Joran too)- they are trying to get his insides working again so his stomach isn't so upset and hurting him.  Michael figured out a way!  Not that this was mother approved.

 Wednesday, while I was waiting for my sister at the elevator I ran into this little guy.  He is with animal therapy and comes to visit daily.  I asked if she would drop by Joran's room.  I think he liked it!  He also got visited by my sister Josi, who was here from Chicago-unfortunately her cute babies were in the hall, and my sister Lisa and her husband Bret also up for a visit. 

 Wednesday late afternoon Joran was moved to "the floor". That is huge when coming from the ICU.  It is huge for us because now Necia and I can be in his room with him and not wandering the hospital while Jeff is with Joran or Jeff trying to get me away from Joran when Necia is hungry.  He was so excited to be with his dad (like right next to him) and see his little sister after over a week!

He also got to talk with Grandma Stephens who isn't able to come visit because she needs to be with my dad.

 After we got him all settled we had promised to take him to see Spider-Man.  We had spotted this guy just outside of the auditorium they used for sacrament meeting.  He happens to be on the floor Joran is on now.  He thought it was cool and kept feeling Spidey's muscles.

 Here he is "sleeping" last night before I went home.  Huge improvement in the last couple days...

Monday's Progress

 Here he is with only one chest tube on Monday.  He is starting to look a little more like himself.  He is on oxygen due to a partial lung collapse after being on the respirator.  It is self repairing with time...he has a respiratory therapist who comes in to "play games" and we blow a lot of bubbles.  He also got up and started walking today...to the door of his room and back then the next was around the nurses station.  His favorite was to the window overlooking the ER so he could see the ambulances. 

 This is the same day but minus a few more attachments...no chest tubes no sensor on the head and one less IV...he still isn't feeling great can you tell?

 

I thought I would get one more pics of my handsome boy before I left for home that night.

A Visit From His Siblings- Sunday

 Here are Annicha and Maren with Joran.  He is still pretty sleepy, but notice the number of pumps in the background is decreasing!!!

 Connor and Cheyenne are trying to comfort Joran.  They had removed the breathing tube and he was so thirsty...he had to wait two hours before he could have a drink.

Here he is with Sierra and Boston...hiding.

We took all the kids down to attend sacrament meeting at the hospital.  The auditorium was full-patients, parents, nurses, doctors...it was awesome.  The people came as they were: some in scrubs, street clothes, church clothes, whatever they had on that day.  We had children in wheelchairs, wagons, pulling IV poles or hooked up to all kinds of machines.  It was a great meeting you could definitely feel the spirit. 

Recovering

 

This is Joran with Jill  she was an awesome nurse..

   

This is Daniel and his children.  Daniel did his pre-op echo.He came by every day to check on Joran and on Saturday even brought his kids - they brought him a lego toy!

 These are all full of meds that Joran is receiving...there are others on the back of the pole...we like to see these pumps disappear!

Joran After the "REAL Surgery

 Here is an update our our little guy...his second surgery...or the real "fix" happened on Thursday the 19th.  He was taken back for surgery at 10 am.  He was on bypass within 15 minutes and they were off and running.  He came out of surgery at 5:30.  It was a very long day waiting for this cute guy!  He is so worth it, but we were so worried.  He had two proceedures done- I will have to get the correct spelling.  They are very rare, especially done together. 
Last night he a an old friend as his nurse...this is Lizelle.  She was his nurse when he was 2 weeks old for several days while he was diagnosed.  I loved her!  He made her earn her paycheck last night as it was a rough night for him.

 This is Cindi...she was his nurse today.  We hadn't had her before but she brought so much peace of mind and kept such a good eye on him. 

I had to get a picture of this...his teacher for next year came today to visit him.  Mr. Burnett was also Annicha's teacher, his wife was my labor and delivery nurse, and his sister is in the YSA ward with Jeff.  Needless to say their family (including his mom-who was Joran's surrogate during school hours) has a special place in our hearts.  Each class in the school chooses a college-Jake server his mission in Florida- Joran will be a Gator next year.  His gator has been very helpful today...in supporting arms and feet and being his buddy!  Thanks Mr. Burnett (and Jen) for coming to visit me!
The Morgans also came to visit while they were at Primary children's with Sam...it was so nice of them to stop in.

 Before you view the next couple pictures you might want to think twice...they are rather graphic.  Because of the work they did Joran's chest was left open to let some of the healing go down.  If not, it would put too much pressure on his heart.  This is most common in small babies because their chest is so small, but because of the work done on Joran it was best to leave him open ...you have been warned.

 The yellow stuff is like tinted plastic...it is sewn to the edges of his chest.  You can see through it- yeah, kinda gross, but kinda cool.  We tease that we know Joran is a good boy because we have seen his heart!  He has to "struts" that hold his chest open.  Tomorrow morning - Saturday- they will remove the struts, and the protective cover and clean him out and then put his chest back together.  This is done at his bedside ...in the meantime he is in a drug induced coma.  They can't have him move around when he is like this. 

 His eyes look open but they really aren't...

He did much better today and it was much less stressful!  Thanks for your thoughts and prayer!

Joran's Heart Surgery

 This might be confusing and I might relate it as more of a vent because it is still so fresh, so I apologize in advance.  I guess I should start with his pre-op experience Monday.  Things were going well, although we did do a lot of waiting.  He was most nervous about the blood draw.  He cried but did really well.  As we were in his Echo my phone rang and it was the lab.  Someone had bumped or dropped his blood and the cells broke -meaning they couldn't run the tests and Joran had to do it again!  None of us were too happy about that.
We arrived on the Tuesday at 7 am and they took him to the OR at 8:20am.  They checked in every hour letting us know how things were going.  At about 10:30 we got notice he was on the heart lung machine and they were going to start the 6-8 hour repair.  About 15 minutes later we saw the surgeon come and and he wanted to talk to us.  He first assured us Joran was doing great and that the assistant surgeon was with him.  Somehow, as the surgeon was reaching to get a tube (they put drainage tubes in his chest during and after surgery) he had an encounter with the scalpel that the lab tech was either still holding or had put on the tray with the tubing and sliced his hand.  Basically, he was coming to tell us he couldn't do surgery!  We sat there in shock!  Joran had already been cut open, his ribs cut, all his organs moved, etc and now they couldn't do anything????WHAT!!!  All the other three surgeons were in surgery or scheduled for a heart transplant later that day and couldn't do Joran's surgery.  There was one preferred surgeon, the one who had sliced his hand because he had at least done the surgery Joran needed before.  The procedure they are doing is rare and complicated.
So...they closed him back up and now he is in the ICU while everyone tries to figure out what to do.  He still has about 7 IV's in, but he is awake and eating slushies while coming in and out of sleep. 
Can I tell you how frustrating this is ?  Jeff and I were both emotionally drained last night...the worst part is that from the surgery waiting room they just sent us to the ICU.  I had Necia with me so  couldn't go in...Jeff and I had to trade off yesterday.  Everything has been remodeled since the last time we were there so here I stood in the middle of the hall with Necia and all the "stuff", tears rolling down my cheeks not even knowing where the waiting room was.  It was a low point for me.  We waited all afternoon for someone to even come and talk to us-nothing!  Finally, the public relations person comes and talks with Jeff-they are worried about us suing I guess!  I was livid...all we got was we will take good care of you, we are so sorry this happened, this has never happened before it's all new and we don't know exactly what to do.  GREAT!
Our Cardiologist came by around 6pm with the thought that maybe Joran should go home and recover and the surgeon should recover and then try this again...WHAT!  I had to walk away...are you kidding me!
They have these parents sleeping rooms off of the waiting room...they were all assigned by the time we even got to the ICU.  The words of the public relations department rang in my head....we will take care of you...
So this is how we were taken care of...Jeff spent the night with Joran sleeping in a chair!

Here is Joran with his nurse Torrey...she was here when he was a baby and when he had his surgery at 9 months...his night nurse Beth was also his night nurse after his surgery at 9 months.  That is so far the most comfort I have had through this entire thing!