Bridger's Heart Two Years Later

I can't believe that it was just two years ago this fall that I found myself sitting next to my little boy in the pediatric ICU hooked up to all kinds of machines and now I am cheering him on at the annual district cross county event for his school where he finished 26th out of over 200 kids!  

  ( I posted about his heart problems  here, here,  here  here  and here....)

This little boy has a lot of heart and he has come a long way in the last 24 months!

His heart function has improved so much that his cardiologist approved him to run as much as he wants!

What a blessing!

 

Look at all those boys all ready for the race to start!  I couldn't even get the whole line in my shot.  There were well over 200 3rd graders!  CRAZY!

Close to the finish line--he is giving it all that he has!  Look at the little face!  He was part of the first group!!  I was so impressed!

They give individual shout out and a ribbon to the first 40 boys.

 

What a special day! 

He was so excited to have qualified for this event, just like his big brothers Connor, TJ and Coleman did.

Exciting!!

 I couldn't help but think back on his heart issues during the last 2 years and feel so incredibly thankful for the miracle of modern medicine, for the knowledge and skills of Dr Frank Fish, and for all the prayers for Bridger from so many of you!  THANK YOU!!

A Happy Heart Story

I really want to record all the details of this monumental experience for our family....but if you want to just skip to the end and read the happy ending I wouldn't blame you a bit!

If you don't know what is going on start here 

then here and here.

Tuesday afternoon Bridger and I traveled to Nashville together and met with Dr Frank Fish at Vanderbilt Children's Hospital. They ran test and drew blood and we could see that Bridger's heart was going in and out of light tachycardia since his cardiac medicine was now out of his system in preparation for the surgery the next morning. We left his office around 6:30 and headed out for dinner and some Ben and Jerry's ice cream!  We tried to enjoy our night together in a hotel. Watching a movie, swimming and snacking on some gummie bears...although we tried to act brave, we were both nervous!

We were back at the hospital bright and early Wednesday morning. I had to beg him to give me a little smile "for Daddy". Since Brad couldn't come (we didn't have a babysitter for our other boys this time,darn it!) he wanted us to send him lots of text and pictures from our big day.

Poor sweetheart was not too excited to be there.  I couldn't really blame him!

Pretty soon we were back being prepped for his surgery. The nurses were so sweet to my little man. They noticed that he had his backpack full of his favorite most comforting  blankies and stuffed animals. The nurse asked him if he would like his little buddies to stay with for the surgery. He said yes and so she said they needed wrist bands too, just like him. I could tell how happy that made him... under normal circumstances that would have delighted him!  What a wonderful nurse to be so sensitive and caring. I was so thankful!  He wanted me to take a picture to show "Dad and the brothers" but he didn't feel like smiling.

We did finally get a smile though when Coleman called (he was home sick from school that day)

 Brother can always cheer you up, you know?!

With his bear and racoon by his side, Bridger was glad that he had time to watch a few minutes of cartoons.

All too quickly though it was time to say goodbye and he was wheeled off to the Operating Room.  This time I was very impressed with his bravery!  In November when they took him away he was so scared and had tears streaming down his cheeks.  That about killed me.  This time he didn't cry at all and I was the one with tears as I watched him go through the doors with his team of Doctors and nurses.  I hugged him tight before I was left to stare at this board.

Luckily the team that was working on him gave me updates about every hour and half or so.

 It was a LONG nerve wracking 6 hours for me.

Some of the updates I received from the OR ...each one was positive this time much to my relief!

*First Dr Fish called out himself (bless his heart) He said "we don't usually give updates this early in, but I wanted you know that even under anesthesia Bridger was still going into tachycardia!  That was such good news! It was a worry, that maybe the first time the anesthesia was what stopped it making it unable to fix.

*They were putting in the instruments and getting ready to map--meticulous work to thread those up through the veins and arteries and into the heart of a little boy.  That still boggles my mind!  This time the Dr was trying to use as few as possible because he was concerned that last time one of the leads may have been laying right on the problem area and suppressed it.

**soon I got this one, the words I had been waiting and hoping for**

*They were able to successfully map and Dr Fish was administering therapy --ablating or destroying the tissue that was creating the problem.  I was so emotional that day.  I knew all the prayers of so many people were being answered.  My heart was so full of gratitude!

I was absolutely thrilled to get the final call that Dr Fish felt that they were able to fix his heart.  That even after an hour of pacing and trying everything to start the tachycardia up again--there was NONE!

I was told that Dr Fish would be out soon to consult with me.  He went into great detail with pictures and pages of Bridger's heart rate records and explained everything to me.  He felt that the surgery was a SUCCESS this time!  He showed me the area that they ablated which was thankfully NOT close to the pacemaker (area that you do not want o destroy).  The problem was close to a nerve which connects to the the diaphragm and if damaged can lead to breathing problems.  He said that they were super careful and he felt that they were clear, but he would be monitored all night to make sure. I was told that there is a small chance (maybe 5%) that the problem could come back, but if it did it would be within the next month or two.

As he was talking with me I couldn't help my tears from sneaking out.  I felt to much love and appreciation for this man who had fixed my little boys heart! I thanked him from the bottom of my heart several times:)

Our sweet boy resting in recovery out of surgery safe and sound!  

So happy to see that perfectly normal heartbeat on the monitor!

Well hello my darling boy!

The sweet nurses getting him all comfy in his room.  

Vanderbilt has the best care, I tell you what!  These amazing people love children and you can tell!

My little man was in very good hands!

Someone even found him a Tom and Jerry movie--his favorite!

He was not suppossed to move his legs for 5 hours after, to allow the veins and arteries to close up nicely.

He was so happy when he could get out of the hospital gown and facetime his brothers!

We played a lot of hangman:)  It was boring, but I was thankful that he was being monitored so closely and it was fun to have so much one on one time with my little man!

 \

The famous Dr Fish...our hero!

Bridger requested this picture with him.  He said he wanted to show his brothers:)

 He came to check on Bridger several times out of surgery and here for our final visit before he gave the discharge orders--yeah!  I am so thankful for this man--that he has dedicated his life to acquire the knowledge and skills to fix little hearts and save young lives.  We love Dr Fish!

Soon we were home!  Although he needs to take it easy for a few days, by Monday he will be able to join his brothers and be back at school!

Modern medicine is truly a miracle!

My heart is overflowing with gratitude.

I have so much to be  thankful for!   There have been so many "tender merices" ,  little and big blessings along the way.  I know that the power of faith is real.  I am so thankful for a loving Heavenly Father who hears and answers prayers. I know that life if full of trials but as we put our trust in Him we can have peace and happiness in this life...even when times are tough.  I really believe that God will consecrate all our experiences for our good when we turn our lives to Him.  

Thank you for all the love and prayers in our behalf.

We love you all so much!

Posted with Blogsy

A Little Update on Bridger's heart

Bored at the Cardiologists yesterday...

1. Bridger: "Mom seriously why are you taking a picture?!" 2. My cute boy putting up with his silly Mom:)

3. He doesn't care anymore  4. Still waiting...

I had to to do something to keep from crying after the EKG and sonogram we had just finished with...I had such a lump in my throat:(

It was not good news, but probably a blessing in disguise.

 I had actually been looking forward to this check up.   I thought it was when they Dr would confirm my feeling that he was doing great and we would start weening him off the strong heart medication that he is currently taking every 8 hours around the clock. The nurse at school had accidentally been giving him his middle of the day dosage from an expired bottle of medicine.  So he had not been getting full strength from one of the dosages.  We had just realized this, and had mistakenly believed that it was a good sign that his heart was better;.

  I thought he was doing great on less--but I was wrong!!

Instead, when the technician hooked him up to the EKG machine instead of doing her usual quick test she let the machine run for what seemed like forever...that was my first red flag.  She was as sweet and playful with him as always, but so many pages of his heart beat were piling up, far more than usual!  Of course I knew she can't say anything to me, but I did wonder what was going on?

Then when we went into another room for the echo cardiogram.  We were laughing and chatting with that technician too--all these people just love Bridger and are so cute with him, which I am so thankful for.  Anyway, we were only into the ultrasound for a few minutes when she stopped and said, I am sorry but I have to go get the Doctor to see this.  My heart sunk...

It turns out his little heart was having problems again.  Lying down he was going up to 169 beats in waves.  I felt like I had been sucker punched!  Once again the cardiologists asked him if his heart felt funny--and he said no.  It was working so hard and HE CAN NOT FEEL IT!  Isn't that crazy?

I wish he could so he could let me know when things weren't right.

In the end she explained to me that he will need to have the surgery again at Vanderbilt.

In the mean time we will have to come back on Monday to be fitted for a a halter for 24 hour monitoring of his heart.  They need to know if the medicine is working right once it is back to full strength in his system or if they need to make changes.   

You know how the Doctors at Vanderbilt were not able to fix his heart last November--they just couldn't get 

his heart to go back into the SVT (crazy fast heart beat) even after all the medicine was out of his system.  Well, I was thinking... this is obviously a very elusive problem--hard to catch.

So even though it is such disappointing news, at least we were able to catch it--right there on record.  Our cardiologists here is forwarding all the test results and data we now have up to the specialist at Vanderbilt so he can study it and try to figure out how to fix his little heart.  The more I thought about it the more I am filled with gratitude that it happened in the office.   I know that was a blessing!

Who knows how long that could have been happening and would have gone on after.  There is the possibility that we would have never known until it was too late to reverse the damage or ended up in the hospital again.

Now at least we can take the next steps to fix the problem, hopefully once and for all.

So in the end, I can see that once again we were blessed.

I know that all the prayers on his behalf are being heard and he is being watched over.

Even though the news was sad, my heart is full.

Thank you again for all your sweet concern and prayers for my boy!

Mysterious Heart

 Well Friday morning we reported to the hospital bright and early as requested.  Bridger was far less nervous and anxious as he was the day before.  I was very proud of his great attitude.

 We patiently waited as they got him all checked in and prepped for surgery.  I thought it was pretty incredible that he said he wasn't scared anymore.  I had a feeling all those prayers were covering him with peace.  He honestly was good in spirits until the very last minute. When a team of 6 Doctors and nurses surrounded his bed and told him it was time to go his expression changed but he did not panic.  He said goodbye to us with a quivering lip and it about broke my heart.  His eyes were red and little tears were spilling out even though his face was stoic.  He didn't cry out or complain at all.  We hugged and kissed him telling him we would see him soon and he bravely nodded his head.  That was hard!

 During the LONG procedure they give you updates by calling you on a special phone in a designated OR waiting room.  We had several updates during the 5 hour surgery, but they were having a hard time keeping him in the arrhythmia long enough to map it.  We were told that without a good map (30-60 points) they can not accurately find the source of the problem, to know where to ablate (or destroy).  With Bridger they could only find 4 points.  That was a pretty crude map and they kept pumping his little body with all kinds of things to try and keep him in it.  Adrenaline, caffeine, diuretics etc.  In the end the Dr who is world renowned in this field was very frustrated/disappointed with how it went..  He said he is rarely ever surprised and Bridger shocked him.  From all the gathered data from the time in the ER and PICU and the tests since---this was a well documented case of PJRT, but when they went in to fix it....it behaved totally differently.  He did not have a good explanation for what was going on.  

SO basically Bridger's little heart has stumped the Doctors!

 Out of surgery--so happy to see this little man!

 Feeling good enough to play games on the IPAD:)

We were told that he would need to remain on the cardiac medicine until his heart functioning was back to normal.  They want to keep me checking his heart 3-4 times a day, but he can go back to normal activity.  We will go in for tests periodically and wear a 24 heart monitor a few times to try and study his heart during regular everyday life.  He ruled out that it was just a virus that caused the extremely hard to control SVT .  They know his heart was having more issues than just the few days in the hospital because the functioning is still not back up showing more damage was done than could have happened in those 48 hours. 

 At first I was so upset.  I really really wanted to have a resolution and be done with this chapter of our lives:)

But that is not going to be the case, darn it!  I do have a HUGE sense of peace. I KNOW that he has been watched over.  That all of the prayers (thank you so much) and beautiful priesthood blessings have been honored. I am sure he has been blessed, more than we realize.  We can be patient while we figure this out.  I believe that everything happens for a reason and I will trust in our loving Heavenly Father even though I don't understand.

At least I know that they were wrong--he is NOT permanently in SVT for sure.  His little heart may have some issues but there is now a very real possibility that he could heal and outgrow it completely.  We hope that is the case, but if not, it is still very comforting that he has a team of Drs working to figure it out.  He gets to go back to almost normal activity and I am not going to let myself worry.  It is quite mind boggling that he had instruments go into his heart through veins/arteries in his neck and both legs just yesterday and yet today he is up and around.  Some soreness and small bandages is all he has to show for the ordeal!   Crazy.  Modern medicine is truly a wonder!

He was excited to get to go home today--just in time to watch the big SEC Championship game with his brothers who he missed so much!  I can't tell you how many times he told us that he wished his brothers were there with him! Life is better with brothers around in his opinion:) 

Once again THANK YOU for caring about us during this stressful time.  We love you all so much.  Your prayers and loving concern were a HUGE blessing to our family!

Now hopefully we are done with drama--and I can go back to posting about boring but happy day to day life!  

Today and Again Tomorrow...darn it!

**First of all THANK from the bottom of my heart for all sweet messages and especially for your prayers!  That means so much!  I sure love you all!

We reported to Vanderbilt Children's Hospital in Nashville this morning to have the famous Dr Frank Fish work his magic on my little man's heart. 

Bridger woke up a little teary eyed and anxious, poor sweetheart. We reminded him that he had received several beautiful priesthood blessings and had so many people praying for him.  We also talked about the Lord's love and care for him and putting our trust in Him, the master physician. He was able to over come his nerves and was so brave!! I was so proud of him.

After hours of tests, long conversations with Drs, lots of paperwork and a little Ipad fun...

We found out that there had been a HUGE error.  No one from their office had told me to quit Bridger's medicine 48 hours before the surgery.  The person that was in charge of letting me know, had a family emergency and we somehow fell through the cracks.  So yesterday morning, a nurse called me from the office to change the time from 7am to 8 am--during the conversation I asked about the meds.  She was shocked that he was still taking them.  I was told to stop them immediately. 

I was so nervous to stop them.  I felt like I could hardly sleep last night. I was told that if his heart went back into the SVT for longer than 20 minutes to bring him into the ER and they would just admit him. It was a little nerve racking for me, but I didn't need to worry.

I think all those prayers were working extra well:). 

They could not get his heart to go back into it the SVT.  The really needed the problem to come back at the hospital so they have a better chance of being able to fix it during the surgery.

They finally even had him running on a treadmill in the exercise lab...

 Which felt so strange and ironic to me.  He was not to exert himself for the last 10 days so that he would not go back into the dangerous rhythms...and now we were trying our best to make it happen.   I had been so careful with giving him his medicine and keeping him resting that this felt very strange now.  I was thinking, geez, last night--I could have slept like a baby!  I had nothing to worry about!

They said his heart was beating irregular, but not going into the SVT rhythm.  It was strange for me to be wanting it to.  It all felt wrong...so opposite of all my prayers the last week or so!  Finally, it was determined that the meds were still too strong in his system and we would have to postpone the surgery.  We were so discouraged.  In the end the Dr and his staff went to great efforts to rearrange their schedule for tomorrow.  So although it is frustrating, we won't have to get back on the medicine and wait too long.  We will be back in the morning.

Bridger was super happy to get outta there and be able to eat.  He had to go in fasting --and we had been  there for hours.  He was thrilled to spend his day eating his favorite foods, christmas shopping in Target and spending lots of time with Mom and Dad:)

It was fun to see him so happy and spend the afternoon together. 

Now he is laying here next to me , with no signs of SVT.  I asked the DR if it could have just healed itself and maybe it won't come back at all.  He said no that is HIGHLY unlikely, but I can't help but dream:) So I guess, I will just hope that we won't have any problems tonight but in the norning it will start up in time for the procedure:)

And this will all be over soon!!  I am looking forward to that!

Heartsick

 Oh my do I ever have a story to tell...this may be a long post...

It all began on Wednesday morning when Bridger woke up looking tired and his throat was hoarse. I felt his head and it was not hot so we talked about if he should stay home from school or not.  I wanted to keep him with me but he has already missed 4 days this year for ear aches or not feeling well and I worried about keeping him home too much.  He said he thought he could go, so I sent him to school with some cough drops in a bag and a note for his teacher.  I told her he seemed tired and was losing his voice, that he may be getting sick.  Would she call me if he seemed worse and I would come and get him.  Well around 10 she called to say that he just didn't seem well.  He did not have a fever but she was worried about him.  She said she could tell that he was not feeling very good.  I AM SO THANKFUL for this sweet, caring teacher! Mrs Devaney was our first angel of the day. I love her:) 

 I brought him home and put him in some jammies and was about to set him up with blankets on the couch for a movie when I thought maybe he was a bit wheezy and when I hugged him I could feel his heart beating so hard.  I wasn't really worried but my first thought was croup and a fever was coming on (my kiids always have fast heart rates when fevering)--and knowing that it gets worse at night, I decided to take him to an instacare close to my house.  Once again I feel like we were watched over and protected. The PA (another angel) was so careful and thorough.  She noticed his heart seemed to be fast--and said "oh Mom he may not have a fever now, but I think it is coming on fast, his heart is really beating!"  She could have just sent us home with some medicine but she had her nurse get him some ibuprofen and checked his heart again after awhile. She ended up getting out the EKG machine --which is what is pictured above to test further.  All the while she is being so professional, I wasn't worried or stressed at all.  I honestly thought they must be really slow today and bored.  I took a picture to show him how cool it looked--to try and cheer him up.  When the PA working the machine could see the results from the EKG  she kind of freaked out. She said something about needles and being really sick and that she was calling an ambulance right now because he needed to be at the ER immediately . This made Bridger cry and I was kind of mad.
I still thought she is just over reacting and making his heart rate climb with saying that.  While we waited a few minutes for the ambulance he was on my lap and his heart seemed to be not as fast. I was thinking that this was a little silly to call an ambulance. As they loaded him in,  I took this little picture of my sweet boy so later he could show his brothers.  When the ambulance doors closed, I told the paramedics that I really wasn't sure this was necessary and that I thought the PA over reacted.  I explained how she had mentioned needles and how I was pretty sure that is what made his heart rate spike.  So they kindly listened to me while they hooked him up to the monitors and told me they would see what was going on. At first the numbers were normal --89...90 and then they just started climbing when his heart rate hit 248 they very calmly told me that yes they really did think it was a good idea to take him now.  I was still just feeling so confused and maybe that was good because I was able to stay calm for Bridger.

 They started an IV in the ambulance and soon we were at the ER at TC Thompsons Children's hospital in downtown Chattanooga.  I had learned on the ride over that his heartbeat should be around 80-100 beats a minute but his was climbing up over 220 (this is called SVT SupraventicularTachycardia)  He was going up as high as 268 and when the paramedic asked him if his heart hurt or felt funny when it was peaking, he would say no!!  This was a little disturbing that he couldn't feel it.  When we got to the ER I was starting to worry, but still not really aware of how dangerous this was.  I think it was a blessing from heaven that I was able to be calm which I am sure was important for Bridger to feel that his Mom was not too worried. I know how children really pick up on the emotions of their parents. 

 To make a long story short...after a few hours, many different doctors, chest xrays, echo cardiograms, EKGs, blood work, urine samples, endless questions and different drugs...we were eventually admitted to the Pediatric Intensive Care Unit.  His little heart was not just having an episode of SVT (fairly common) but would not kick out of it no matter what they did (very rare).  At this point they were just masking the problem with medication.

It was such a HUGE relief when Daddy got there.  He was at work over an hour away but came as quick as he could. ( By the time I took this picture he had been with us for hours)

Another EKG--what a trooper!

We spent a couple of LONG nights in the PICU.  I tell you , I really don't think I slept a wink.  With my sweet little boy hooked up to so many machines and all the beeping was truly a frightening place for a Momma.  I remember sitting there holding his little hand while he slept and my heart hurt so much I was sure it would break.

Another EKG~ I think he had a gazillion of these tests.  He was so brave, he kept wanting me to get a picture to show his brothers:)  I felt this sense of peace as I knew that he was in God's hands.  So many people were praying for him and he had received a priesthood blessing from his Daddy and our wonderful Bishop.  I really felt the spirit of God and His love for Bridger and me.  I knew He was aware of us and loved us. 

We soon found out that he had a dangerous heart condition called Persistent (permanent) Junctional Reciprocating Tachycardia (PJRT). .This is an unusual form of supra ventricular tachycardia (SVT) --in fact less than 1% of people with SVT have this form of the disorder.  While usually SVT  sufferers have episodes, Bridger's heart was now permanently in it.  Left untreated it would result in heart failure. It had  been a really frightening past few days. Even with the medication, his heart rate had been spiking to over 230 and then droping to 50-60 (It should be 80-100). They were trying to get it under control so that there would be no more damage to the heart and possibility of heart failure. I was told that once they stabilized the condition (control the arrhythmia) he would need a procedure called an ablation. This is when they would thread thin little wires up through a blood vessel in his groin and guide them into his heart. Then a machine sends energy to his heart via one of the catheters. The energy destroys small areas of heart tissue where abnormal heartbeats are causing an arrhythmia to begin. 

One great blessing is that the leading specialist in this area of cardiac medicine  (pediatric electrophysiology) in all of the U.S. is at Vanderbilt Hospital in Nashville (just a couple of hours away) so he had been consulting with Bridger's cardiologist and helped with the diagnosis and treatment. He will perform the surgery and our cardiologist kept telling us how lucky we are to have the BEST of the best doing this  procedure for Bridger.  I can't help but feel that Heavenly Father has been watching over this little guy. 

On Friday evening we were given the OK to leave the PICU for a regular room in the hospital. 

Bridger was so glad!  Happy day knowing there would be less cords and monitors attached now:)

He didn't get to lose the heart monitor though--in fact he had to carry that himself to his new room!  I think he may have had the worlds BEST nurses and Doctors in the PICU.  I felt like he was surrounded with such loving care.  I was so grateful.

In the regular room, his brothers were allowed to come for a visit and he was thrilled!  These brothers sure love this boy and had missed him like crazy!

After another night and more EKGs , echos and consultations with Drs he was allowed to go home until his surgery in about 10 days.  They trained me in how to check his heart rate and give him his medicine.  I am now nurse Mommy:)

We couldn't be happier to have our boy back home.  Brad and I brought his mattress down to our room where we can keep him close and easily give his middle of the night dosages.  He is feeling so good now that it is a little hard to keep him down.  ( I am not complaining) His cardiologists wants him to rest as much as possible and not go out in public where he could pick up an illness (no school or church etc).  They are hoping to improve his heart function before the procedure. 

I can not even describe my deep sense of gratitude for all the blessing and miracles I feel like we have experienced this last week.  Now I am content to watch over and care for my little one at home--trying to soak up and enjoy these quiet and slow days together.  I mean really, how often would I get all this one on one time to hang out with my usually busy 7 year old? He would normally spend his days off at school and playing outside, too busy to snuggle up reading books, playing games and chatting with his Mother.  That is definitely the silver lining in all of these dark clouds and I will take it:)