Tackling WPW

WPW

Wolff-Parkinson-White Syndrome (WPW) is a condition in the heart where there is an extra electrical pathway within the heart. The challenge with the extra pathway is that it allows the electrical pulse that causes the heart to beat to enter into the heart’s valves unrestricted. This unrestricted electrical pulse can cause rapid heart rate and possibly sudden death if unchecked.

WPW is of even greater concern for athletes who push their heart rates to exorbitant levels to be the very best in their sport. Arielle is that athlete. She works her body in volleyball and track to be the very best. She is naturally athletic, but she does not take that for granted. She constantly strives to be better.

So when the diagnosis of WPW came knocking at her door, Arielle met the challenge head on. For more details on how the challenge began, check out my blog post “From Routine to OMG!

Once Arielle received the official diagnosis of WPW, she made the decision to go to the USATF Junior Olympic Nationals in Jacksonville. She made the choice in spite of the diagnosis because she had a score to settle. She did not make All-American in 2014 at Nationals in Houston TX and she wanted some vengeance this year in Jacksonville. And WPW was not going to keep her from it.

However, now that track season had finished with her redemption at Nationals, and high school volleyball season was at hand, we made plans to have the cardiac ablation procedure that would make WPW history once and for all for Arielle.

Our first appointment was a consultation with the electro-physiologist, Dr. David Bush. Dr. Bush would be performing the procedure on Arielle. He talked with us about WPW and particularly about Arielle’s case. He put her in the “moderate risk” category because she was an elite athlete and he saw the results of her Holter monitor diagnostics. Her max heart rate during diagnostics was 174 beats per minute. He assured us that doing this procedure was definitely in her best interests. Our final question before leaving the consultation…can she go to Six Flags Fiesta Texas? With a resounding “Yes” we were on our way…out of the consultation and on to Six Flags!

Procedure Day

Procedure day was met with palpable apprehension. D-Day had arrived. This was the day that Arielle would reclaim her sports life, but the angst about the unknown left her non-plussed. Since Arielle couldn’t eat after midnight before the procedure, she skipped breakfast and slept in. I quietly ate and silently prayed. This was a big day. We packed up our hotel and headed to the hospital.

Travel to the hospital was awkward. I knew that Arielle had tons of questions that I had no answers for. We joked a little as we let Siri navigate the route to the hospital. Upon our arrival, we parked and went down to the cath lab.   We checked in and sat down. Keri, the nurse who would be assisting in Arielle’s procedure came in to put a numbing agent on the area where the IV would be placed. They were finishing up another patient and would get to Arielle soon enough.

Arielle is not a fan of pain or the unknown, so I know that waiting for this procedure was really taking its toll on her. Even as a toddler, getting her to cooperate with her pediatrician or to get a shot called for some very creative thinking to get it accomplished! But she toughed it out because she understood that it was for the greater good. That’s the power of being a disciplined athlete. She knows that practice, repetition, weight training and core workouts are necessary because she understands that those things the keys to a great season, that greater good. This procedure would lead to greater good in her athletics.

I just simply prayed and stayed in faith. I refused to let my mind stray to the “what ifs”….

Soon, Keri came to get us to get Arielle prepped for the procedure. Arielle changed into the ever-so-fashionable hospital gown got her IV put in. Arielle hates needles, but she is too nosy not to look at what is going on. So since she hadn’t eaten since 10pm the night before, I thought it prudent that she not watch the IV go in because she might faint. So I had her look at me and talk so she wouldn’t be tempted to look.

The entire procedure crew was very nice and supportive. They were awed by how tall Arielle was and her athletic accomplishments. Apparently it was all the talk about this elite athlete coming in to get this procedure done. After all this was the pediatric unit! They actually had to extend her bed to its maximum length to accommodate her length.

They gave Arielle some happy juice to get her relaxed and that set her off in a fit of loopy giggles. I gave her kisses and she was wheeled away and I was taken to the waiting area and given instructions on how to contact them. The time was 1pm.

I went and got my laptop and some lunch and proceeded to start my blog. The procedure was scheduled for anywhere between 2 and 4 hours, so I got comfortable. About an hour or so later, Keri called give me an update on Arielle’s progress. She was doing well and Dr. Bush had isolated the alternate pathway.

Still prayerful, I continued to work on my blog. Shortly after that, around 3pm, Dr. Bush came in to say the procedure was complete and in about 20 minutes they would be taking Arielle upstairs. I packed up and was going to see my baby. Keri came and I actually rode up to the 9th floor with Arielle and the team. She looked good, but of course she was still anesthetized so she was oblivious to me or her surroundings.

They got Arielle in her room in the pediatric cardiac ICU (PCICU) and I was settled in with her. It was around 3:30pm. As I watched her sleep and looked at her vitals, I saw the blip in the EKG that was noticeably absent when we started this journey. I began to let my guard down. It was finally, FINALLY over. Just needed time to recover and this whole ordeal would be a thing of the past. Yes!

But then… Not again with the “but”…

At around 4pm I looked at her vitals and noticed that the blip seemed to flatten out and disappear…just like in the beginning…but I am not a doctor but it didn’t seem right.

Shortly after my mental assessment, one of the nurses came in and was on the phone with someone. I would later learn that it was the tech team that was assigned to monitor patient vitals. The nurse looked at me politely but an urgently concerned line etched her face. I listened to her end of the conversation…”No it doesn’t look like a delta wave…it can’t be that…yes I will call him.” My guard immediately started easing its way back up. What now?

The nurse took pictures of Arielle’s vitals. She explained that she was sending them over to Dr. Bush for review. The medical technician came in and took another EKG. Arielle was oblivious to it all of this activity because she was still under the anesthesia. There was a flurry of activity that had me on high alert. There was something not right with my child and the fix that was supposed to change everything.

By 4:30 Dr. Bush was back. He looked at the EKG and looked at me and said, “I don’t know what is going on, but we have to go back in and fix this. You guys have traveled too far to come back and I want to get this fixed for her. It is going to take a little bit to get everyone back together but as soon as that happens we are taking Arielle back downstairs and I will put in more lesions and close that pathway. I only have to go in on one side this time because I know where it is located.”

I say OK and then wait. At around 5:30 Arielle begins to come around. She starts to move and is a little perturbed by her discomfort. She is in and out of drowsiness so I didn’t try to explain to her what is about to happen to her again.

So back downstairs we go. It’s about 7pm. Arielle is still groggy and needing to go to the bathroom. I am putting on a brave face and trying to find that courage that had kept me up to this point. It was eluding me. My armor had been pierced and I didn’t know if I would make it this go round. All my reserves had been tapped and I was operating on fumes.   I was not scared or worried, but I was very, very concerned. After the initial ablation, Dr. Bush had let me know that the alternate pathway was very close to the original pathway and if he accidentally ablated the original pathway, it would cause heart block and that would end Arielle’s athletic career. Not restrict it—END it!

And now he has to go back in. It is of great concern for me. I am in the waiting area and I feel absolutely alone. I am shaken to my very core. Tears are pooling, but I cannot let them fall. If one falls then there would be an uncontrollable deluge and I have to be there for my baby. I have to be able to be her rock no matter the outcome and God knows I am believing for a positive outcome.

All of my external forces were showing signs of weakness, but my internal man was the prisoner of a positive expectation. I had to hold on to that hope that made me schedule her physical believing that no cardiac issues would be found. I needed that same hope that sent us to Jacksonville and allowed her to compete in spite of WPW. I needed that hope that put us on every roller-coaster at Six Flags. For I walk by faith and not by sight! So although my armor was failing and there were stress fractures in my thoughts, I still knew that it was going to somehow, someway be alright. It had to be.

I got a phone call from Keri saying that the lesions were done and they were doing tests. These tests involve introducing medicines into the body to give the heart adrenaline spikes so that they can check where the electrical pulses are traveling.   This goes on for quite a while to make sure that the pathway is completely closed. By 9:30pm Arielle, the team and I are taking the ride back up the elevator to her room. She is heavily sedated and still intubated. I couldn’t even look at her. My armor was almost completely useless at this point and I felt way too vulnerable.

Through the night, Arielle’s vitals remained normal and she showed no signs of reversion. An EKG was taken the following morning for Dr. Bush to review prior to discharge. Things were fine and the pathway was completely shut down. She still had to recover and was not completely released to go back to sports. Final clearance for competition would come when Dr. Black saw her in El Paso on August 26, 2015.

That was the best news ever. We were ready to head home. But first Arielle needed to use the bathroom normally before she could be discharged. The nurse helped her to sit up on the bed. Once she overcame the dizziness of double doses of anesthesia and 30 hours without food she was able to use the facilities. This was her “Get out of Jail FREE” card!

We went to breakfast at IHOP on our way out of San Antonio. It was raining but I wanted to get Arielle some food so that her systems could start recovering. She was still pretty drugged up and unsteady and it took some getting used to seeing Arielle in that state. It took Arielle a little bit to get used to being in this state too. She is very independent and having to hold on to your mother for support was a bit much.

As we were eating breakfast, I look up and see Arielle in tears! Intrinsically I knew. Finally, she had allowed herself to be overwhelmed by her situation. She had finally allowed herself to look over the edge of the cliff and into what might have been and to know that it was over. It is Over. It’s O-V-E-R!

I went over to sit with her, put my arms around her and just let it happen. No explanation necessary. No conversation required. Who cares that we are in IHOP. If they only knew… Over and done!

Arielle had her final appointment scheduled with Dr. Black on August 26, 2015. This day was dubbed “FINAL EKG AND OFFICIAL CLEARANCE DAY”! We were looking at this day with great expectation. But then…

Not ANOTHER “But”! This cannot be happening!

On Monday 8/24 I receive a call from the clinic to say that they are cancelling all of Dr. Black’s appointments because he is unable to come in from San Antonio. Then I am told that Arielle is being referred out to network and I should receive a referral letter in the mail in 7 days…. I heard nothing else after that. Seven days to wait to get a referral to a doctor who would then take a few more days to get me an appointment. And while this is happening, Arielle is unable to get back to volleyball. Absolutely not!

I thanked the nurse for the bad news, told her it was unacceptable but not her fault and came up with my own plan B. I immediately called Dr. Bush’s office, spoke with his nurse, and set another plan in motion. I got a prescription from Dr. Bush to have the EKG done here at the clinic and to have it faxed over to him to be read so that he could clear Arielle.

When we met with the provider on Arielle’s appointment day, 8/26, we gave an update of the procedure and how if it had not been for her looking for Marfan Syndrome the WPW would not have been discovered. Then she put in the order to get an EKG done and to have it faxed to Dr. Bush. We know the EKG routine now and it’s not as scary as it was on the front side of this situation. At first we were hoping that nothing was found and we are still hoping that nothing is found, but for a very different reason this time. Finding nothing means everything this time.

We waited and waited to be called to the EKG room. Our nerves were still on edge because of what happened while in San Antonio. The EKG was done and we left. Both Arielle and I were still uneasy, because it just seemed like the med tech didn’t do the EKG right. She just did not know what was riding on this EKG. One slip up and we are in trouble.

Now we just had to wait for the final review by Dr. Bush. I contacted the office to make sure that the EKG fax had been received. But Dr. Bush would not read the fax on Wednesday. He was in Laredo doing screenings. He would be back in the office on Thursday to read the EKG. So we had to wait ONE More Day.

The bad thing about waiting the one day means that she would not be quite ready to play in the volleyball tourney in Wofford TX, the weekend of August 28th – 29th. She was allowed to attend the tourney because her discharge paperwork said that she was able to practice but not released to compete. So I am waiting to get the clearance so I can get it to the trainer, so he can get it to the coach, so she can take the court with the team on Friday morning. Talk about cutting it close!

As of the writing of this blog…Arielle is 100% cleared! Back on the court and back in the game!

Check out  he WPW Outtakes blog. It has additional content on the WPW journey that I did not include here for the sake of your attention span.

 

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