Picture of the Heart and what was done to Jason's

Here's a good picture of the heart and shows which parts of Jason's heart were replaced:

Friday June 21, 2013 - Shand's visit (First Post-Op)

Let me start by going backwards a couple of weeks so that you know what we've been through up until now.  Friday, June 7th, we went to the ER because Jason was still running a low grade fever (between 99.7 and 100.6).  The cardiologist at Shand's didn't understand why he was still running this, so he wanted us to be safe rather than sorry.  We went to Holmes Regional's ER and got them in contact with Jason's cardiologist (Dr. Moguillansky) at Shand's.  They did some x-rays and lots of bloodwork, including blood cultures to see if there were any infections.  Everything came back to okay (still low on blood, but is expected for such a major surgery).  So we went home after a couple of hours.

Then Saturday, June 15th, his heart started pounding in his chest.  He felt like his heart was going to pound out of his chest.  His vitals were normal, but if you placed your hand on his chest and felt it pounding, it didn't feel normal.  After a quick text to Jason's cardiologist, his recommendation was go to the ER.  Even the triage nurses were taking turns feeling at the Holmes Regional ER.  It turned out that his Potassium was too high which was probably causing the pounding to feel worse.  He stopped taking the Potassium supplement that was prescribed to him.  The next day I made him drink, and drink, and drink lots of water (I think he drank 6-7 bottles of water) to flush out the Potassium and bring it back down to a normal range.  As that day went on, he started to feel better and better.

The next blood work that was done showed his Potassium to be within the correct range and his INR was 2.5 (finally within range), and he was feeling better.  Still tired, but better.  Then something miraculous happened a few days later!  His fever finally broke for good on Thursday, June 20th and he felt really good that day...thank God!

So, on Friday, June 21st, we headed up to Gainesville for Jason's first cardiologist visit after leaving the hospital.  He was still fever free!  As soon as we got there, we went to radiology to get the two chest x-rays.  Then he got his blood drawn, had an EKG, and eventually had an echo.  After a little while later, the doctor came in to see him.  Everything looked good!  Sometime between the last ER visit and that day, the effusion around the heart was gone!  I believe everything got better when he flushed the one day with so much water.  I think it flushed the infusion right out of him which caused his fever to break.  His INR was still 2.5, his Potassium was 4.7, his blood was still a little low, but very slight.  Because his blood was a little low, his iron was low and his platelets were a little elevated.  Doctor told us to stop avoiding greens and to adjust the Warfarin levels around his normal eating habits.  Because the effusion is gone, he could stop the diuretic.  So the only medications he is on now is Warfarin and baby aspirin.  In another 2 months, he can drop dosages of Warfarin because his INR will be allowed to be between 1.5 and 2.5.  Then hopefully in 6 months to a year, he can be off it altogether and only be on baby aspirin and Plavix.  He also got the okay to go back to work on July 8th, which he'll be allowed to drive at that point also. 

Thank you everyone who prayed for Jason and our family!  Your prayers were definitely being answered!  Please keep praying for a continuous healing process with no more complications (not sure I can handle any more).

May 23, 2013 - Update 4 Jason's Heart Surgery

So, I'm in CICU and now Jason is  becoming more aware of what's going on, which means anesthesia is finally wearing off.  He's very thirsty but isn't allowed to drink yet.  He's also itchy from the pain meds. I  explained the procedure they had to do and he seemed upset,  but I  tried to explain that it was a good thing.  right now I'm typing this on my phone so excuse me if anything ifs misspelled or grammatically incorrect  :-) I  heard from more than one nurse that he's doing extremely well for what they just did,  so that's good!  Praise God!

May 23, 2013 - Update 3 for Jason's Heart Surgery

Jason's out of surgery.  Because of the heart valve replacement  and his aorta being so thin in some areas, they ended up doing the Bentall procedure (replaced entire aorta with graft) and the valve is the On-X Mosaic which could be a lifetime heart valve.  There's also a study that just came out on it to have minimal coagulants and another study in the works to be off coagulants and just be on aspirin and Plavix.  He's already off the ventilator, which is really good and the thing he worried about the most.  His chest tubes are also only in the front and none at the sides which is less painful.  The doctor is hopeful that his recovery will be quick and everything looks really good.  The reason they had to replace the valve was it was leaking in a bad way and they couldn't get enough blood to flow through the heart to stop it, so the only option was to replace it.  His aorta was thinned out a lot in some areas really bad, so the operation was definitely needed.  They said the possibility of using the heart valve he had would be 80-90% over the next 2 years and only 50% over the next 5, so it was inevitable to replace the valve.  We are still waiting to go back and see him.  There doing chest x-ray, bloodwork, etc... which is called tucking him in.  That is all I have for now.  Please keep praying for him to recover and have no complications.

May 23, 2013 - Update 2 Jason's Heart Surgery

Just got a call that they got into his chest and the bicuspid valve was leaking worse than they thought and looked worse than they thought.  They are going to replace his valve with a mechanical valve called the On-X http://www.onxlti.com/heart-valves/patient-guide/available-options-for-heart-valve-replacement/  This is kind of upsetting and I sort of lost it.  This was a quick decision we made right before surgery for a "what if", never actually thinking it would come to this.  Please continue to pray for him!  They will call again when they get him on the bypass machine and I will update again when we know more.

May 23, 2013 - 1st Update on Jason's Surgery

So, we had to be at Shand's Hospital (or as it's called now, UF Health) at 6:00 am.  Jason was taken back around 8:30.  They gave him happy drugs right after taking him back.  We had to talk to the surgeon and decide if they had to replace the heart valve that is leaking, which heart valve replacement procedure would we prefer.  The choice was an artificial heart valve where you'd have to be on Coumadin for the rest of his life, but it would be at low doses, or get a tissue valve replacement which has an average lifespan between 10 and 20 years.  After a long deliberation, we went with the artificial heart valve, but hopefully it won't come down to having to replace it.  They said they would call us around 11:00 when the bypass machine is started (pumping blood to vital organs while they work on the heart).

May 21, 2013 - Heart Catheter Procedure

After getting up, me grabbing a bite to eat from McDonald's, we headed to the hospital.  As soon as we got there, the head nurse that had told us the surgeon had cancelled the surgery met us and gave us some news.  She told us that the surgery was most likely back on for either tomorrow or Thursday with 90% certainty.  So, we were excited again, but Jason was also overly nervous again.  Little bit of an emotional roller coaster with this, but God knows what he is doing.

They took us back pretty quickly and got things going.  We decided not to have Jason do anesthesia, but do sedation instead, and what really ended up happening is the anesthesiologist just gave him the relaxation medicine, which doesn't last too long in your body.  So, he doesn't remember them shaving his leg or feeling the needle going in his leg to numb it, but he remembers the catheter going in and being wide awake and responsive.  He asked the doctor lots of questions during the procedure and watched the catheter on the monitor.  He said he felt his heart flutter every time the catheter touched it.  As soon as they brought him back to the recovery room, they came and got me and he got to eat lunch.  Before his 3 hours were up for laying down, ensuring the artery stopped bleeding, we got a call saying the surgery was a definite the next two days and about 10 minutes after that we got another call to say that it was back on for Thursday morning and we had to be there by 6:15 am. 

While in the recovery room, we asked a few of the nurses about hotels since we were going to have to make another reservation and we actually found one that was cheaper and more comfortable.  Not sure how we'll sleep tonight, but hopefully peaceful and we get to sleep in since we don't have to be at the hospital tomorrow.  We're meeting a friend for breakfast I think and a friend for lunch, so it should be an easy going day.

May 20, 2013 - Jason's Pre-ops up at Shand's Hospital and Cardiology Clinic

So, we headed up to Gainesville today for Jason's pre-ops.  The first one is at 12:30 pm at the Cardiology Clinic.  While we wait for the EKG person to come in, the heart surgeon's head R.N. came in and asked if we had been told yet.  We obviously said no, and it turned out that Jason's surgery had been cancelled for Thursday and wouldn't be rescheduled soon.  We were very upset, but were told that it was for a baby that was born and needed heart surgery.  The one thing we did try to emphasize was that our insurance was starting over July 1st and we would probably have to pay $12,000 out of pocket for all the expenses that this was going to be (we already met this out of pocket maximum for this policy year).  Also, timing-wise, there were other things to consider.  She immediately emailed the surgeon and he replied back that it had to be in June then.  But because we were already up here, they wanted Jason to continue with the heart catheterization procedure the next day, which had to be done before surgery anyways.  Also, do the other pre-op for the surgery because it is good for 30 days.  This way, if the surgery is scheduled last minute, we would be good to go!  So we went to the hospital and did the anesthesia pre-op for the surgery.

After all the pre-op stuff, we headed to the hotel and checked in along with cancelling the rest of our stay.  Jason was disappointed that it was pushed out further and we were going to have to cancel all the short term disability paperwork and start over with a new date.  But, we thought, this must be for a reason!  We went to dinner and while we were at dinner, the heart catheter doctor called and said we wouldn't be able to come in when he told us.  We thought he was going to cancel too, but just told us to come in an hour later than was planned, 8:00 am.  The hotel was pretty uncomfortable with the air conditioner that barely worked and the bed that was sort of uncomfortable.

December 6th CCA's Christmas Program

We drove to Gainesville in the morning after dropping Kaylyn off at school.  Jason and Ashlyn had their yearly cardiologist visit at Shand's Pediatric Cardiology.  Ashlyn looked/sounded fine for everything.  Jason still has a slow leak in his heart where the artificial patch was placed when he was 4 years old.  The doctor did not seem worried about this because his blood pressure was still good and he could not hear the leak.  He also had the weird pneumonia last December with no symptoms, which the doctor worried about a little.  He wanted to get the x-ray and CT scan from that ER visit (Jason actually thought he was having a heart attack since the only symptoms were chest pains that radiated through to his back).  He says depending on how those look, he may or may not want an MRI.  He wants to see the size and shape of his heart to make sure everything is looking alright.  This doctor keeps up on all the studies and research and says that they should be looking at these things for his type of heart defects at around this age to make sure everything is still looking the way it should.  Didn't sound like there was anything to worry about and it all seemed pretty routine.

After the appointment, we drove back to Melbourne, dropped Ashlyn off at tutoring and picked Kaylyn up.  Drove home to make dinner and then Jason picked up Ashlyn.  We quickly ate, showered and got dress for the girls school Christmas Program that evening. 

2nd grade did two bell songs and then sang a song together with the 3rd grade.  Ashlyn was so funny when she delayed on the bell twice and giggled while covering her mouth after she rang it.  It was so cute because that was the first time I had ever seen Ashlyn singing a song where she actually knew all of the words to the song.  Amazing!  4th grade did a recorder song and then sang a song.  CCA's 4th-6th Grade Chorus sang a song, which Kaylyn is a part of.  They sang so beautiful!    They got to have milk & cookies after the program.  We didn't get home until after 9:00 pm that night with school the next morning.