Bentley's SVT

On the way home from school October 28th Bentley told me her heart felt like it stopped beeping.  I didn't think anything of it and told her she was still awake, so she was probably ok.  Later as we were getting everyone in costumes to go to the branch trunk or treat, Bentley said she felt a little sick to her stomach.  I took her to the couch to help get her shoes on when she said, "Mom my heart is beeping really fast."  I felt her chest and her heart was racing.  I immediately called for Kenney.  He agreed it was way too fast and tried to time it.  He said it couldn't count that fast.

We called our friends and took her to their house to have Preston who's a PA take a look at her.  He did several different screenings and a few procedures to try and decrease her heart rate.  He was not successful and told us we needed to take her to the ER.  All the other kids were ready to go to the party, so we decided Kenney would take Bentley to the hospital and I would take the other kids to my parents who were already in Childress.  Preston called as we were picking up the other car and offered to take our kids so I could be at the hospital too.  I was so thankful for that offer.  I was praying and scared at this point.  I almost lost it when I called my mom to tell her everything we knew so far and to as her to take the other kids.  I kept it together and got to the hospital as they were hooking Bentley up to all the machines.

I have been in the ER with other kids for 'emergencies' but nothing quite like this.  I'll take stitches any day over this.  Heart problems are serious, and I felt so unknowledgeable.  Her heart rate was staying over 200bpm (It should not be over 120bpm continuously).  They tried a few things like Preston to get it down, but nothing was working.  It calmed my fears a little that she did not have any other symptoms and they weren't rushing around like this was a time sensitive emergency.  They were continually working on her and trying to fix it, but they weren't rushing.  We were then told they would have to use IV medication to get it down.  The first attempt for the IV failed.  They were digging in her arm trying to get it but weren't successful.  They put her face in ice water twice hoping to not poke her again for an IV, but that didn't worth either.  They took a urine sample and did x-rays to rule other things out that could have been causing the problem.

When she knew they were going to do another IV, she looked at me and screamed, "Mom, no!"  It was heartbreaking for me.  I know I had tears in my eyes, but I didn't want to scare her even more.  Kenney and I were both barely holding it together at this point.  We were both holding on to her to try and give her any comfort we could.  I've never prayed so hard in my life.  I was pleading with Heavenly Father telling him how much I love her.  Immediately, I heard in my mind a voice saying, "Not more than me."  At that point, I knew no matter what happened to her, our father in Heaven would take care of her and do what was best, even if that meant the worst.  Thankfully however, a new nurse came on at 7:00 in time to try the IV, and she was able to get it quick and easy.  The nurse took a blood sample also.

Next, they had to give her medicine to stop her heart, hoping it would reset to a normal rate.  Had I not just been reassured of our father in Heaven's love for Bentley, I'm not so sure I would have handled this next part very well.  They put an AED pad on the front and back of her chest and told us this was just a precaution and they shouldn't have to use it, which made the situation even more stressful.  I was glad they were trying to be prepared, but they were about to give her medicine that would STOP her heart!!  They also told us the medicine can also make the patient feel very funny like they are falling and stuff.  The nurses pushed the dose of adenosine through, and nothing happened.  They didn't tell us the first, low dosage, usually doesn't work.  That would have been nice to know.  They tried again with a higher dose.  The medicine has to be pushed through the IV lines very quickly because it metabolizes super fast.  The same nurse that missed with the IV and then dug in her arm, slipped as she was pushing the saline through to get the medicine to her heart faster.  I was less than impressed even though I knew she was trying her hardest.  I was watching Bentley to try and reassure her if the medicine made her feel weird, when I looked up to see that the heart monitor showed her heart rate at 20.  Kenney said he saw the machine pause and then start back up.  It rose to about 115 and stopped there.  The medicine worked!  Bentley could tell immediately her heart felt normal, and thankfully she handled the medicine like a champ!!  

We then waited for a consultation from a pediatric cardiologist.  He said that Bentley could be released for the night but that we needed to be at his office first thing in the morning.  We got home and arranged and rearranged everything to make it to Lubbock early the next morning.  Things went well with him, and he diagnosed her with supraventricular tachycardia.

We were told from so many family members and other people in our community that they were praying for us, and for the first time ever, I truly felt that strength that is in the power of prayer.  I didn't feel that power just because Bentley ended up being fine or because we got answers quickly, I felt it before I knew all those things.  I felt the love those people had for Bentley and our family.  It is something I will never forget.            

I didn't get any pictures of her in the Wonder Woman costume before she was changed into the hospital gown, but it was very fitting because she was so brave and strong!  This was after things calmed down and we were waiting for instructions on what to do next.

She did great while Dr. Robinson did the echocardiograph.  She laid still and we received great news!  Her heart looked healthy and functioned perfect.  She just has one or two pieces of tissues that can also initiate a heartbeat.  When she is older/bigger she will have an ablation procedure that can remove the tissue and she will basically be healed!  She will need to take medicine every day to control her heartrate until she can have the procedure and will most likely have another reoccurrence like she just had, but nothing is life threatening. 

Getting a 12 lead EKG

She did so awesome!  Kenney wasn't allowed in the back with us, but he was there to support us.  I wish he was because he remembers things better and tends to ask better questions.  We follow up in December.  I will probably send him back with her this time!

After the doctor, we went just a few places and she found these cute sunglasses.  It was so good to see her be herself again. 

 

This is Kenney's recording of what happened:

Well, I had one of those terrifying moments as a parent this week.  On Tuesday (10/26/2021) I took Bentley to the AG building parking lot and let her practice riding her bike, just the two of us.  I put some music on a speaker and just let her ride her bike some more to get some practice.  I challenged her to go around the van 3 times in a row.  On her third time around she fell and hurt herself a little.  She ran up to me, and after brushing her off and telling her she was okay I asked her, “Do you want to go home or try again?”  She said she wanted to try again.  She then proceeded to ride around the van 1, 2, 3, 4, 5, 6…..all the way to 10x in a row.  She was so determined to accomplish what I asked her and then surpass it.  I was so proud of her for making it her own choice and being successful doing what she set her mind to.  It was one of those times when all the world was right and good. 

The next day (10/27/2021) I went to work as usual.  When I came home, Elizabeth was getting all the kids ready in their Halloween costumes to go to the church trunk or treat.  Around 5:25pm she said Bentley told her, “Mom my heat is beating fast”.  Elizbeth put her hand on her chest and then asked if I could check her.  When I took her radial pulse sitting on the couch I couldn’t tell if I was feeling her pulse right.  I then checked her carotid pulse and asked Elizabeth to get me a timer to manually take it.  When I set the timer I couldn’t even count the beats because they were too fast.  I told her to call Rachae and see if Preston was home.  Fortunately, he was home and we all got in the van and drove over there.  He did some screens on her: blood pressure was normal, blood sugar was normal, everything was normal except her heart as beating 220-230 beats per minute!  He tried to have her blow into a straw but it didn’t change anything.  He then told us we needed to take her to the ER to get an EKG on her.  I took Bentley with me all dressed up as Wonder Woman to the ER, and Elizabeth took the other kids to go to the church.  As Bentley and I walked up to the hospital they opened the door when they saw me.  As I walked up to the counter with Bentley, Maria behind the counter said hi, but after seeing Bentley with me she said, “Are y'all the patient?”.  I said, “Yes, we are the patient”.  They immediately directed us through the side door to the ER.  They had Bentley hop up on the table and began putting the EKG tabs on her.  I just remember looking at her all dressed up as Wonder Woman trusting me and what they were having to do to her.  I started to fill out some paperwork and then Elizbeth showed up.  Preston had switched places with Elizbeth and took the kids to the church trunk or treat. 

 

From there things began to get a little scarier.  Her heart rate remained >200bpm.  They kept asking us about her history and any signs or symptoms leading up to this.  We reported, “No, no signs or sx.  No headache, no vomiting, no prior racing heart, nothing.”  They attempted to have her breath into a straw again with no success.  Then they put an IV in her right arm which was a failure.  I held Bentley’s head to mine and held her L hand to help keep her still.  When they couldn’t get the IV in they had to try the left arm.  Fortunately, another nurse, Shelley, was able to get it a little faster.    They asked her if she wanted to try the ice water in her face.  She agreed and attempted to place her face in a bucket of ice water.  She did it for 4 sec and then 5sec but nothing changed with her heart rate.  After that Brent Grimes, a Nurse practitioner, said the next step is to put a medicine in her IV that would block the signal in her heart from cycling so fast and hopefully reset her heart rhythm.  They then started to place the AED defibrillator pads on the front and back of Bentley’s chest and back.  They hit her with 2mg of the medicine, but it didn’t do anything to her heart rate.  Shelley said she has never seen 2mg actually do anything but the 4mg should.  They then prepped for the 2^nd attempt with 4mg.  I looked at Bentley again laying there on that bed and wondered what was going to happen.  I was so afraid of losing my daughter who just yesterday was riding her bike around the AG parking lot with me.  They had to administer the medicine very rapidly because of how fast the body metabolizes it with another syringe to push the medicine to heart.  Once they pushed it in I saw her heart rate on the monitor pause and then began to slow down.  As her heart rate started to drop I felt such relief but still fear about what just happened to my little girl.  Brent Grimes got a cardiologist(Dr. Robinson) on the phone and was sending the pre and post EKGs to him.  He then told me the cardiologist may want her transferred to him tonight or we could go home and f/u first thing in the morning.  After about 20min Brent came back in and said we could go home and f/u with the cardiologist in Lubbock first thing in the morning at his office.  Bentley was so brave and trusting of Elizbeth and I.  One of the nurses kept coming up to me and asking if I was okay and I wanted to say, “Shut up and leave me alone.  I don’t want my daughter to see me cry or it might scare her.”  I kept getting hit with waves of such gratitude for her heart rate coming down.  Brent said we still don’t know what caused this to her heart but after seeing the cardiologist we might have some more answers.

 

After we left the hospital, Jason and Rene showed up with the kids at the house as well as Preston and Rachae.  They let us use a foot pulse ox on Bentley that night just to be safe.  Jason and Rene talked to us and they offered to take the kids to school the next day while Elizabeth and I took Bentley to the cardiologist.   Jason also helped me give Bentley a blessing.  That night the stupid monitor went off at midnight because the battery on the sensor died.  Needless to say, Elizabeth and I did not sleep much.  We woke up and had to leave by 6am for Lubbock on Thursday 10/28/2021.  The thoughts that kept going through my head was, “I hope her heart is okay.  What can this be?  How is this going to affect her for the rest of her life?”  Once we got to the cardiologist office Elizabeth and Bentley were the only ones allowed to go back with the doctor because of all the stupid covid rules.  She had another EKG and an echocardiogram done.  Elizabeth said she was diagnosed with supraventricular tachycardia and her heart was fine.  She has some cells on her heart that are sending abnormal signals causing her heart rate to get caught in a loop.  She will need to take medicine every day to control the rhythm until she is  between 60-80 lbs and can get an ablation procedure performed that can permanently fix her heart rhythm and she won’t have to take any medicine again.  Relief.  We now knew what the problem really was, her heart was okay, and now we have a plan.

 

When we got to Childress to pick up the medicine the pharmacy did not have the medicine ready.  They said they did not have one of the components to make it.  I said we need it today.  After calling around they said a pharmacist in Crowell TX had all the stuff for it.  I told them to please tell her to go ahead and make it and I will go pick it up.  I left Bentley and Elizabeth at Kerry’s house and went to get it.  The wind was blowing 20-50mph that day and the day before.  Once we got back home it was very odd.  From 5:30pm on Wednesday to 5:30pm on Thursday our lives were in chaos not knowing if we were going to lose Bentley, to not knowing if her heart was damaged, to not knowing how our lives were going to have to change, to just take some medicine daily and return to your normal life.  I took Radley at 6pm and went to coach his basketball practice.  That evening we resumed our normal schedule of life.  I feel so grateful and blessed to be the parent of such a strong, beautiful, confident girl.  I’m grateful to be married to such as wonderful woman who loves her children as much as I love my children. I’m grateful for a Heavenly Father who cares about me and how much I love my family to not take one of my children away from me. 

 

There are times in your life that will scare you.  I used to think I was not scared of anything, but I am so scared of losing my family.  I love all of them and would do anything for them.