June 29, 2014 - Jason's Heart Again

We just made it back home about 2 hours ago from Gainesville after Jason was airlifted there on Tuesday night/Wednesday morning.  I will paste the events that happened that I posted on Facebook so that I don’t have to retype all that happened with some updated information to explain some things further.

June 24

Please pray for Jason. They just had to shock his heart to bring the rate down

UPDATE: His heart was going at 254 beats per minute.  Over 100 is too high!  The only thing that saved him was that his blood pressure was really good throughout the entire event (117/72).  They only had to shock him one time and it came down to 80 something beats per minute.  Scared me to death when they first took him back and said to get the pads ready (external defibrillator to shock his heart).  The Shand’s Hospital helicopter then came just before midnight and took Jason to Shand’s Hospital in Gainesville where all of his heart doctors are located.  I picked my mom up and we drove to Gainesville. Jason got there around 1:00 am and we got there around 3:00 am.  After spending some time with Jason we went to a hotel room and laid our heads down around 5:00 am and got about 5 hours of sleep before heading back to the ER.  When we got back to the ER, Jason’s mom had arrived.

June 25

The CT Scan didn't show anything. His ElectroPhysiology (EP) study is scheduled for tomorrow afternoon. They will put 9 electrical lines up both arteries in the groin area and try to force the tachycardia to occur so they know where it is stemming from. Their best guess is scar tissue and hoping they can do ablation on it. If not, then lifelong medicine. If it's the lower thoracic, then it would be a defibrillator, but they're hopeful it wasn't that because his blood pressure was good during the attack. If they can do ablation, they'll do it while they're already up there and he'll be sedated. Please continue to pray, especially for the doctors to find it and be able to fix it easily! Sounds like the earliest we'll be able to leave is Friday. I think we are in the right place though! Thank you for everyone's prayers, love and support!

June 26

They just took him back to do the EP study! Also found out if he does need a defibrillator, they can do that today as well.

UPDATE: They weren’t able to do the defibrillator the same day.

June 26

They had a hard time producing the tachycardia. They gave him adrenalin and it happened. It was the lower thoracic so he needs a defibrillator and they want to get an MRI before the surgery since they will not be able to ever get one again with a defibrillator in his heart. A little disappointed, but they explained that it's really a safety net and will stop this from ever happening again. It's not a difficult procedure and they monitor out through a phone type device. Batteries last 8 years and the device can last up to 20 years. Won't be coming home tomorrow since they'll put the defibrillator in tomorrow. They said he was an interesting case so they had a gaggle of people in to watch his EP study. Too funny! He never takes the easy route ;-)

UPDATE: We actually got told later that it was not difficult to produce the tachycardia and they were able to do it multiple times in multiple places.  The batteries can last 4-7 years (depending on how often it gets used) and the wires can last up to 20 years.  When they change the battery, they change the whole device out and just hook it back up to the existing wires.

Yesterday

Jason got in for his MRI this morning which means he will have the surgery today to put in the ICD (defibrillator). Not sure when the surgery will be, but will keep you up-to-date (they indicated afternoon to evening yesterday). He's still in the MRI and I am heading over to hospital soon. Debating whether to get hotel room for one last night or just stay with him tonight. Keep praying that his surgery goes well and he does not get an infection! Love to all!

UPDATE: Got a hotel room for the last night so I wasn’t overly exhausted the next day.

Yesterday

They took Jason back around 1:00 to put in the ICD. It will take about an hour and a half for the procedure so he should be done by about 2:30.

Yesterday

He's out and doing well. Waiting for them to let me back in holding room. They will put him on low dose beta blocker to prevent this from happening again and the defibrillator is the back up for that.

UPDATE: Instead of allowing me to come back to the holding room, I was ordered to go to Chick-fil-A to get a supersized meal for Jason and bring it back to the ICU room so he could eat a good meal.  He had too many MPO orders (holding of food for tests and surgeries).  He was hungry!

11 hours ago

All the different doctors have looked at Jason Barton this morning. Everything looks good. They did another x-ray and EKG and the ICD system person came to check his ICD with the computer. That was cool! Being told we should be released by this afternoon. Praise God! Thank you everyone for keeping Jason and our family in your thoughts and prayers!

UPDATE: When they checked his ICD, it said he was using the pacer 7% of the time (heart rate below 60 beats/min will pace it to get it to go back up).  My guess is that it's because of the combination of pain meds and beta blocker.

7 hours ago

We're busting out of here!

September 27, 2013 - Jason Update

So, Jason is still on anticoagulant medication (Coumadin), baby aspirin, and beta blocker.  He is still in pain and hates the pounding of his chest.  He's been having more pain lately and his scab is still not healing (falls off and scabs up again, constantly).  I finally forced him into going back up to Shand's today while we were on the field trip.  The doctor thought his scab looked infected so he prescribed him a very strong antibiotic (2000 mg/day) along with some antibiotic cream to put on it.  He also switched his beta blocker to a more potent brand to try and ease the pounding.  He said that everything else looked fine and his mechanical valve was working beautifully.  Low and behold, 24 hours later, Jason started feeling much better.  I have a feeling that the pain stemmed from an infection.  His scab is finally healed and everything is getting better.  There's still some pounding, but it's better than what it was.  The doctor also told him his INR could go lower now since it has been four months since the surgery.  He can regulate at 1.5-2.5 now.

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 - 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.

Jason's Update

We haven't told too many people about what's going on with Jason except family and co-workers.  So, Jason had his normal pediatric cardiologist visit with the doctor he's had since he was 2 years old this past December at Shand's in Gainesville.  Him and Ashlyn go together every year and have their appointment together.  At this particular visit, Jason asked who he thought he should start looking at to see since his current doctor is getting older and probably going to retire soon (~85 years old).  He said he wanted Jason to see this one doctor and that she was there that day and he would go get her for him to meet.  Unfortunately, or fortunately, she wasn't available, but her partner was.  On his way to meet Jason he looked at his file quickly and his echo that he had done the year before.  He noticed that his bicuspid valve was dilated and it looked like it was just under 5 cm dilated.  He talked to Jason about this when he met him and they scheduled an MRI to get an exact measurement.

The MRI was done a couple of weeks ago in February.  It showed he had a leak in the valve, but it was only 17%.  Apparently that's good.  If it's under 15% they don't call it a leak, and 15-50% is mild and anything above 50% is moderate/severe.  The dilation on his bicuspid valve, however, was measured at 5 cm and that's usually just past the range where they like to do surgery to keep it from getting any larger.  Really the surgery is to prevent a possible aneurism from happening in the heart, since the dilation continues to grow over the years.  They consider this an elective heart surgery, since it's a prevention surgery.  A good thing that came out of the MRI was that they saw where his surgery was from when he was 4 years old to fix the coarctation of the aorta and it still looked really good!

Jason has a sit down appointment to talk to the heart surgeon, pediatric cardiologist and the cardiologist that specializes in congenital heart defects as an adult (which was the doctor that saw the issue and read the MRI).  It is scheduled for March 19th.  He can get all the questions he has answered hopefully and feel more comfortable. 

We have already tentatively scheduled his surgery appointments for having the catheter done on 5/21 to go in and make sure there's nothing else wrong with his heart as to ensure that the surgery will go smoothly and the actual surgery is tentatively scheduled for 5/23.  We made this schedule so that we could do it right after our Disney cruise (literally the next week) and the kids would be out of school.  His surgery will entail him staying at the hospital for up to a week, but the doctor says at his age and health, he sees Jason getting out in 5 days.  He also does not need to go on coagulants since it's a certain type of surgery.  I believe what the surgery entails is going in through the chest and putting a sleeve around the aortic root on that valve to prevent it from getting any larger.  So from all of the open heart surgeries you could have, this is one of the minor ones.  Because of his age and health, the doctor has really good prognosis for all of this and that's what is important!

I just wanted to let everyone know what was going on, and prayers are always a plus!

Jeff Green on the Celtics had this issue and surgery done.  It explains it and the surgery at this website.