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Sunday, July 21, 2013

Again With the Heart??

On Thursday night, Alex and Ben had karate. They came back from class, all pumped up and happy. After a while of unwinding, I put Ben to bed as usual. I went to take a shower. A few minutes later, Ben came in the bathroom and said he needed me as soon as I was done with my shower. This was weird, because it was really late, Ben was really tired, and usually he just goes right to sleep after we put him to bed. 
By the time I got out of the bathroom, Alex was upstairs too, and he and Ben were on our bed. Ben was more upset than I have ever seen him. He said his heart was racing, he felt like he was going to pass out or die. He cried that he is super worried about his heart defect but has been too afraid to tell us how worried he is. He thought his heart was going to go crazy and something was really wrong, he said. I did my Mama/Triage Nurse Assessment and didn't see any of the signs of cardiac distress our cardiologist has warned us to look for. Having had panic attacks myself, I thought this might be what Ben was experiencing. After my 'thorough' assessment, I decided his symptoms didn't warrant going to an ER or calling 911 at that point. 

Alex and I did our best to calm Ben down. We did relaxation techniques. We did deep breathing. We tried everything to just help him calm down. Every minute or so, Ben would ask me to feel his heart through his chest and tell him whether I thought his heart beat was slowing down or speeding up. He kept asking if I was scared about what was happening to him. He asked if I thought he was dying. I really thought this was a panic attack, so I was very confident in staying calm and helping Ben calm down. I'd say "No, Ben, you are NOT dying. You will not die until you are 103 and you die of old age." Then Ben would start freaking out "Don't talk about anything Mom! Don't talk about dying!" Okay, but I'm just answering your question...he was irrational and just completely freaked out. For about 45 minutes, this kept going on and on. When he said "All I want is to wake up tomorrow morning and not be dead," that really made me feel so sorry for him. I wish a Mommy Hug would solve all our problems these days.

Ben finally calmed down enough to lie back on the pillows. I got into bed to read, and he snuggled next to me. Every few minutes he would ask me if I could look at his face and make sure he wasn't turning blue (a sign our cardiologist said to look for that would mean cardiac distress). Finally, finally, Ben fell asleep. 

A little while later, Ella came to fetch me for our mid-night party. When I went to her room, I saw Alex laying in Aidan's bed with him. We waved at each other through the night-light-filled darkness. 

Alex left the room, and a while later I tried to go back to our bed too. When I got there, Ben was sprawled on Alex's side, Alex was sprawled on my side, and was snoring as loud as can be. I decided not to rearrange their bodies to try to find a peaceful sliver somewhere in my bed, and instead I went to Ben's bed. A little while later, Ella woke me up, insisting I come find breakfast for her. Boo hoo hoo, I said. All I want to do is sleep after the intense night with Ben! No rest for the weary.

Friday morning, I couldn't shake the heavy feeling in my heart. I kept wondering if there was something about Ben's meds that had made his heart race like that. Or was it actually a cardiac problem of some kind? Or just a panic attack? Fridays are our days where our mornings are free, until mid-afternoon when Aidan has a couple hours of therapies. I had planned a fun outing where we'd all go see the new movie "Turbo." We relaxed during the morning and then all got ready to go have some movie fun.

I bought our tickets, the kids all picked out their Special Movie Candy, and we found the seats that everyone agreed were perfect. Just as the commercials started, Ella had to go potty. So I took her out to do that. When I walked back into the theater, Ben was coming out to find me. His heart was being funny again and he was very, very upset. He said he felt like he was dying, he needed to go home RIGHT NOW. Part of me was like uh, man? I just paid about $803 for movie tickets for all of you, and candy for all of you, and we haven't even gotten to the PREVIEWS yet! We're not leaving! 
I had Ben sit on my lap and try to relax. Take deep breaths. Calm down. But it didn't work. He started to get more and more anxious and upset. I thought quickly about what I needed to do. Ben still didn't have any specific cardiac distress symptoms that his cardiologist has said to watch for, but obviously something was going on. I thought since Ben was in the middle of having this heart funky-ness, maybe a doctor could really see what was happening and rule out any cardiac problems. So I made the disappointing, executive decision to leave the movie and head to the ER, four scared little children in tow. One thing about our kids- they are extremely close when it comes to one of them being in trouble. The rest of them are very concerned when one of them is sick or hurting. Which is very sweet and endearing, but also very stressful for Mama. Because not only do I have to concentrate my full attention and care on figuring out what to do with the sick kid, but also somehow manage the other kids' high anxiety about what is happening to the sick kid. Little bit tricky. I have to remember never to freak out because that will freak the kids out even more.

As I drove to the ER, Ben sat beside me, completely freaking out. He said his heart was racing. He thought he had a fever. His left arm felt numb. He couldn't see normally. He was shaky. He thought he was going to pass out. He was sure he was dying. As I clenched his hand all the way to the hospital,  my hand was sweating more than even his. But when he asked me over and over if I thought he was dying or if I was scared, I answered calmly NO. You are not dying and I am not scared. I am worried about you and what's happening, but I am not scared. Because if Mama's scared, that's really super bad.

As we pulled into the ER, I organized the kids into who would do what, just like we do every time we have an emergency. I told Ella and Aidan that when we got out of the van, they were going to hold Jonah's hands. I told Jonah that he was not to let go of their hands until we were in a hospital room. I told him he was in charge of them because I had to carry Ben in because he said he couldn't walk and was still completely freaking out. Everyone did exactly as they were told. They were perfect. I carried my big boy hurriedly into the ER, told the front desk lady that my son has aortic stenosis and a bicuspid valve and was having palpitations. She got us into a room immediately. Before we even found enough chairs to get the other kids situated, they had Ben hooked up to an EKG and other monitors.

Long story short, the x-rays, blood tests, lab results, EKG results, and physical exam all came back ok. Other than an elevated heart rate, Ben was ok. So the doctor couldn't really say what was going on with Ben, but that signs pointed to panic attacks. I racked my brain, trying to find the tie between the first attack and the second. Was it a side effect of any meds? Stress? Fear? I don't know. I still don't know. It happened out of the blue and stopped out of the blue. Ben's cardiologist did put him on an "Event Monitor" which is a portable heart monitor, for the next 30 days. If Ben's heart rate exceeds 140, the monitor picks it up and the staff calls us to see whether Ben is doing normal 10-year-old things, or if he's in distress. 

Ben is not happy about this monitor. I think it's a combination of worry about his heart, worry about being different, worry about the cords getting tangled, worry about having another panic attack, worry about life in general. He can take the monitor off to shower, swim, or get wet with the hose. Other than that, he has to wear it all the time. Luckily, it will be off by the time school starts. And hopefully, it will show that Ben's heart is fine. 

I talked to the psychiatrist about Ben and let him know what was happening. He said at this point we won't change any meds, we'll just keep monitoring Ben and see if he has any more panic attacks. They may be gone forever. Or maybe not. We don't know.

Ben has had to sleep next to me since the attacks started. He wants to snuggle a lot. He looks pensive and worried more than normal. But since I have had panic attacks before, I know the language of the terror that he feels and we can talk together about it all. He did not want to travel to spend the weekend with us and extended family this weekend, because he said he feels more comfortable at home. I said you cannot let panic attacks rule your life. You cannot say "I might have a panic attack, so I'm not going to live life to the fullest. I'm going to stay home, just in case." Ben understood this. We had a great weekend at Nana and Papu's house, and no one had any panic attacks. 
Our summer has taken a turn I didn't see coming. Ben doesn't want to go to summer camp twice a week like I had originally planned. He's worried about the whole heart thing, and who can blame him? I don't think it's worth the anxiety, trying to fight him about this. So I cancelled camp for the rest of the summer. It was the best camp experience the boys have ever had, so at least they know that some camps are great. We'll go back next summer. 

I guess we'll take it one day at a time and see how things go. I wish my kiddo didn't have to go through this. I wish my other kiddos didn't have to be scared about what is happening to Ben. When the doctor told us that Ben's test results were coming back fine, Aidan came up to Ben's hospital bed where he was hooked up to all kinds of wires and IV's, and said "Ben, I'm so happy and relieved I'm just going to cry." And he did. Whenever we have a Kid Emergency, I feel like I'm this close to losing it and sobbing hysterically while rocking in the fetal position in the corner, too scared to see what is happening. But then I remind myself, I'M the one who is in charge of these kids and I have to take care of them. Even if it's scary. And if I start crying, I won't stop, so during the emergency I try really hard to hold it together. When I get home and have a few private moments, I let the flood of fear and tears out, and then feel better. As I was trying to run into the ER, holding my almost 11-year-old boy, looking back to make sure my other three were in tow, I felt like I was on the cliff of losing it. As I said the words "My son has aortic stenosis and is having palpitations," it suddenly felt very real that our little boy has a heart defect. And honestly, I wasn't sure I was strong enough to face what might be coming. I don't know how to find courage to face these things with our kids, other than to just make my body go through the motions, clench my children's hands in my sweaty, scared one, and kiss them at every opportunity. And tell them how I love them more than anything, and I thank God every single day for giving me each of my children.

1 comment:

B Sheppard said...

Oh Carrie.... I hope he's doing better. B was having panic attacks so bad when we first moved that I had the nurse line to the local children's hospital on speed dial! Now we're dealing with a broken arm and activity restrictions coupled with school starting on the 31st!
Miss you and best wishes!!