Achey Breaky Heart

Both of my kids were absolute terrors when they were little. From Matt barrelling down our street straight towards a busy intersection when he was 10 to Aubrey climbing anything and everything, they constantly made my heart stop. Aubrey was actually worse, because she loves bugs and has no fear of creepy crawly things. Kids don’t understand that most of the reason why we scream, yell, and punish them is purely out of fear. Fear for their safety, future success, happiness, security…It’s why we push and hover.

I’ve always feared for my kids, especially Aubrey. When she was about a year old, she drank Era (laundry detergent) from the lid that Matt had left on the bathroom counter. At 18 months, she swallowed a penny. I’d never felt time halt before, but from the moment she started to choke, time screeched to frame by frame. I grabbed her and threw her onto my knee with enough pressure to dislodge it so she could sort of breathe. I raced her to the hospital where they took her into an operating room. They wanted her in a sterile field in case they needed to cut her open if it fell in her windpipe while they were pulling it out. She was fine, but I was ever more vigilant after that.

Matt was my easy one. Not to say he never did anything, but his death defying idiocies were fewer and farther between. I never worried about him walking alone, living alone, driving alone. Now all I do is worry.

He had a MUGA scan on Wednesday to see if his ejection fraction has improved in the month that he has been on his medications. The echocardiogram on the day he was diagnosed showed his EF at 30%. That means 70% of the blood in his left ventricle was just pooling there and not being pumped out. A normal EF is anything above 50%. His cardiologist had warned us that if his EF was below 35%, he would need to wear a LifeVest, which is a type of external defibrillator and heart monitor.

The nuclear tech that did his scan was lovely. She explained everything that she would do before she started, then explained again as she went. A MUGA scan involves taking a rather large amount of blood, separating out the red blood cells, tagging them with a radioactive agent, then injecting them back in. Then a large “camera” takes pictures of the heart, allowing the tech to see how much blood stays pooled in the heart while it pumps.

She let me watch while she measured the blood pool frame by frame, so we knew the results immediately. Matt’s EF was 33%. MY heart stopped for a moment, and I wanted to cry. Instead, I pulled on my hair to keep the tears away. Without a LifeVest, Matt could quite literally drop dead. If his heart went into V-Tach (beating too fast) or V-Fib (beating erratically), he likely wouldn’t know it. His heart would just stop and he would die. He would be fine until he wasn’t fine.

Fortunately, the LifeVest is 98% effective. While I do worry about that 2%, I can sleep with those odds. His cardiologist ordered that he be fitted for the vest immediately. A visiting nurse came out to his apartment to show him how it worked, what to do when it went off, and how to arrange all the wires and pads. Aubrey, Amanda, and I were all there so we would know what to do if it went off and Matt was unconscious.

Watching my son’s heart beat was an emotional thing for me. No one understands how different a mother feels about her child except for other mothers. This person on the table grew inside me, was birthed by me, nursed at my breast for 11 months. His heart is a piece of my heart. Knowing he is ill and could possibly cease to exist terrifies me in a way that I’ve only felt once before, and that was when I thought Aubrey might cease to exist. I cannot imagine living in a world that does not have Matt in it.

Our family had already discussed Matt moving back home if he needed the LifeVest. We decided it would be best. Since his lease is up, he can move without ruining his rental history. Being home will give him the option of not working so many hours and will relieve a lot of his financial stress. He knows I’ll make sure he’s eating right, and he won’t have to exert himself to clean his apartment. He can focus 100% on resting and allowing his heart to heal.

Of course, that decision threw life into a tizzy. Aubrey refuses to share a bathroom with Matt, so she’s looking for an apartment. While it’s about time for her to move, she was waiting until she turns 21 in June before moving out, because then she’d be eligible for a management position at her work. That would possibly mean she’d end up in a different city. At the very least, she’d be making enough to afford a nice place versus whatever dive she could afford right now.

Because Matt has asthma and is allergic to animals (although he loves them), I am going to have to clear as much dust collecting crap out of my house as possible. I will need to dust and sweep every day to keep the pet hair under control, and that will be much easier if we have less stuff. We plan for Matt to take over Aubrey’s room. We will install a window AC and block off the central AC vent to keep his room as dander free as possible.

As Matt said, he hates to be a, “woe is me” kind of person, but right now, he gets to be, “woe is me.” We agree. For at least the next six months, the world will revolve around Matt. It is all about him. It really is only fair after all the times Aubrey was the center of the world while we took care of her medical issues. She’s been great about giving up her room and is completely supportive of Matt moving home. As much as my kids fight and pick at each other, they love each other. She’s worried, but she is a rock.

Once again, life is one day at a time. I cannot think about tomorrow, I cannot think about “what if.” I am focused on what has to be done right now, this moment, today. I will not whine about being cramped together in this house. I am grateful that being cramped means we are all still here. More than usual, I have an attitude of gratitude. All these changes we must make are because Matt is still alive. To me, that is worth it.


Dance Dance Revolution

Just a few seconds can remind you why you fell in love with your partner. Ever since Matt was diagnosed, I’ve had to make a ton of effort to keep my fragile-bound marriage from crumbling completely under the stress. This is actually a good thing, because focusing on my marriage keeps me from being overwhelmed with panic for my son. On the flip side, when one person is putting forth way more energy than their partner, it can breed a little resentment along the way. That’s where I’ve found myself lately; I have walked quietly and carefully over the past few weeks so that Ron doesn’t get super stressed about all the things we have to do as parents of a sick adult child. Although I know that I have a million reasons to love my husband, it’s nice to have tangible evidence.

So what happened to feed that little spark? Night before last, I was trying to design a crocheted bodice for a dress that I’m collaborating on with a friend. I normally watch/listen to a tv show or movie while I play with my yarn, and I chose Star Trek: Into Darkness. I found myself too absorbed by the tv and realized I needed something fluffier that required less attention, so I started catching up on Glee. I was streaming and for whatever reason, the video was really jerky. As Ron was walking past, he stopped during one of the dance scenes and commented on my slow bit rate. He said, “See, I can dance like Glee, too!” and he did a dorky little dance.

Why is it that a few seconds of an impromptu dance does more to make me feel loved than all the cups of coffee, bowls of oatmeal, and loads of folded laundry that Ron does every day? I honestly don’t know, but I think it has to do with vulnerability. He never, ever dances, so to see him joke around made me feel safe and loved. While it might sound kind of silly, I thought it was incredibly sexy.

Yesterday was pretty awesome, too. We went to the Fiesta fireworks at Fort Sam and ate ridiculously overpriced carnival food, listened to torturous cover bands, and watched Aubrey ride a couple of ridiculously overpriced carnival rides. We were there for about four hours before the fireworks started. Ron only complained a few times. That’s damned miraculous, because he normally complains incessantly (he and his cat have much in common). Once again, I felt loved. We rarely go to any kind of event, so just the act of going made the whole day special, and to hear him say he liked the fireworks was just icing.

Considering where we were just three months ago, we are leaps and bounds ahead. Yes, we take our marriage one day at a time, but that’s how any marriage works. It’s all that I can hope for.

Working For The Weekend

I love weekend mornings. Ron is home, so coffee is made and breakfast is an event. The house is quiet other than the cat meowing his head off. It is peaceful and cozy, and my reward for having shuffled two children around every Saturday for 23 years. There is a lot to be said for having kids early…I am young enough to enjoy their absence from my house for a few years before grandbabies start coming along.

This morning, Oreo started in with his howling as soon as we sat down with our cups of caffeinated beverage. He has this thing about not wanting to eat the food that is in his bowl. Instead, he meows until Ron comes in and either squishes the chicken with his finger or hand feeds Oreo a piece at a time. Today, Oreo was having none of it. He didn’t want his chicken even after Ron squished it. When Ron went back into the office, Oreo stomped around with the Grumpy Cat face and his ears back, pissed off at the world. He climbed behind my chair where I have a bag of candles from IKEA that are still wrapped in brown paper and started shredding the paper and eating it. I turned around to make him stop and he swallowed a piece while giving me his “fuck you” face. Finally, Ron opened a can of tuna which King Oreo decided was worthy of his palate.

Although I normally do laundry on Fridays, I slacked off yesterday. I started a load first thing. Even though the basket was overflowing, it was still only two loads, which is incredibly awesome. It’s amazing how much laundry kids can generate. Even though both of mine did their own laundry starting at age 8 (Matt) and 10 (Aubrey), I still washed towels, sheets, table linens, sofa slipcovers, etc., which was several loads anyway. Now it’s four loads tops, including my sheets and everyone’s towels. Awesomeness!

Yesterday, a friend sent me a picture of a dress with a crocheted top and said we should collaborate. He’s an excellent seamster and makes some really cool pieced dresses for sale on etsy and music festivals. While Ron made the coffee, I went through my stash and dug up all my cotton yarn. I also found several skeins of a bamboo yarn that feels and drapes like silk, though it is much, much less expensive. It was exactly what I need for my next knitted shawl, as soon as I finish the current shawl nightmare. I knitted and crocheted swatches while I drank my coffee, making this a perfect morning.

Matt is feeling pretty good, and his meds are making him tired, which is exactly what they are supposed to do, so that is good news. He has a MUGA scan scheduled for this Wednesday to see if or how much his ejection fraction has improved after being on the meds for a few weeks. When I talked to him last night, he complained of being bored to death, especially after I said he couldn’t come with us to the Fort Sam Fiesta fireworks tomorrow because it would be too much walking. I posted a request for PS3 games on my fb page and one of my geeky guy friends is sending him some. I offered to teach him how to knit but he declined.

The Fort Sam Fiesta fireworks is one of my favorite Fiesta events. They are usually timed to explode with the 1812 Overture blasting on giant speakers. Since my birthday is the 25th and I was born on a Friday, which is when the Battle of Flowers Parade is held, Fiesta has always been like one giant birthday party for me. I remember one year when Matt was five and Aub was just a few months old, Duane was being an ass as usual, so my birthday was a miserable day. We were living in the top of a duplex and our back stairs looked out towards Fort Sam, which was about two miles away. I was in the kitchen when I heard the popping noise, so I opened the door and there were the fireworks, clear as day. Matt and I sat on the back stairs and watched until the last one dissipated. It’s one of my best birthday memories.

Another of my best birthday memories was my senior year in high school, when my birthday fell on a Friday, the same day as the parade (only rarely does that happen). My mom got us tickets to sit in the bleachers under the highway, and took an ice chest filled with Bartles and James wine coolers. I’d had several by the time the parade started, so I was having a really good time. The parade had come to a halt due to some horse disaster further up, just as the Army band float was going by. After they were stopped for a minute or so, they started playing “Twist and Shout”. It was like the scene in Ferris Bueller’s Day Off; people came streaming down off the bleachers into the street (me included) and started dancing and singing. The float was there long enough to play the entire song before the parade started up again.

This year, my birthday falls on a Friday once again, but going to the parade or NIOSA is too hellishly hot for me to enjoy it. Instead, Ron is taking me to Texas de Brazil so I can watch Aubrey fly. It’s been over a year since I last saw her, and she does some seriously insane stuff now. Dinner at TdeB is an easy way for Ron to be off the hook for a present, although I would never turn up my nose to a gift certificate to Knit Picks.

Now that Matt has an abundance of time on his hands, I’m hoping he’ll go back to writing music. I suggested that he come up with a full album’s worth of songs, then he can sell them to help pay his medical expenses. Artists are always their worst critics, and as is typical, he doesn’t believe his stuff is good enough. I recently listened to a bunch of stuff composed by a grad from Berklee, and Matt’s stuff is way better. I think it takes a certain level of arrogance to be successful in the music business, and both of my kids are extremely humble about their talent. It’s frustrating.

I guess it is time to start my day for real after two cups of coffee and goofing off for a couple of hours. I’m hoping to get my king sized bed assembled today, and my queen sized bed broken down. I’ve spent an enormous amount of time looking at king sized duvet covers, comforters, and quilts, but I still haven’t found anything that I like in my price range. Champagne taste, beer budget, as they say. There’s a lot of cleaning to be done, too. I never said anything about loving weekend afternoons!!

Eat For Two, Breathe For Two

I will never forget the moment I became a mother. It wasn’t when my son was born. That was just giving birth. Any woman can do that. No, for me, it was the next day. The doctor discharged us 10 hours after delivery, but I walked in the door of the house to find the phone ringing. It was Matt’s pediatrician telling me to bring him back to the hospital immediately because they needed to run some tests. My idiot OB/GYN didn’t check me for Strep B before labor, so I didn’t get antibiotics during labor and Matt contracted it. When we got to the lab, they needed a urine sample from him, so they put a little plastic bag on him that had tape around the top. After he peed in the bag, they just ripped it off him and he started screaming because it hurt. I was ready to kill the lab tech, and I would have given anything to take on the pain for my baby. THAT was the instant I became a mother. That feeling never stops, no matter how old our kids are.

On Thursday, I went with Matt to his one week follow-up with his cardiologist, and to get the results of his echo from last week. Dr. B. said that he wanted to do a cath procedure to double check that the cardiomyopathy wasn’t caused by a blockage, and he ordered it for the next day. He asked Matt how he was feeling on the meds, and Matt said the coreg was making him really tired. Dr. B. told him that is the point of the coreg. It lowers his adrenaline to give his heart a chance to rest, so Matt will have very little energy over the next six months. He explained that he would double the dose each time we see him until Matt’s at 25mg twice a day, and then he’ll start raising the dose of his lisinopril. The goal is to get Matt feeling as tired as possible.

After Matt’s cath test yesterday, the doctor sat with me in front of a computer and showed me the video of the scan while he explained in ever more detail what it all means as far as Matt’s treatment plan. The good news  is that Matt’s arteries are perfectly clear, so it is definitely viral. The bad news was that Matt’s left ventricle is so enlarged that the doctor couldn’t get the lead in there. Every time he tried, Matt’s heart rate and blood pressure would jump. Instead, Dr. B. ordered a MUGA scan so they can determine if Matt’s ejection fraction has improved. I asked what his ejection fraction was during his echo. We had assumed that it had to be over 35% since they let him leave the hospital. We were very wrong. Matt’s ejection fraction was 30%, which is pretty damned bad. Anything below 35% is worrisome.

Dr. B. explained that the MUGA scan will tell us whether or not Matt is responding to the medications. If his ejection fraction has increased, then we are good. If not, then Matt will need to be fitted for a “life vest” that he’ll need to wear 24 hrs a day, except when showering. The life vest will detect any arrhythmia and will shock his heart to get it back to a normal rhythm. Without the life vest, Matt could develop an arrhythmia that could lead to flash pulmonary edema, which would then cause his heart to stop, killing him instantly.

Of course, Matt is at high risk until he gets the scan. It’s not like he’s magically protected for the next week or two until he either responds to the meds or gets the vest. While I appreciate Dr. B.’s candor, knowing that my son could quite possibly die in the next few weeks really sucks.

Fortunately, the meds do seem to be working, as Matt isn’t quite as swollen and he’s exhausted, so we are all hopeful that his ejection fraction is improving. Matt’s medical team has been sure to point out that a negative outcome is worst case scenario, and Matt does not seem to be a worst case. Dr. B. told me about a patient he had when he was doing his fellowship; he was a 28 year old male with congestive heart failure, just like Matt. However, this patient’s cardiomyopathy was caused by a blockage. The damage to his heart was so extensive, there was nothing they could do, and he died.

Last night when I got home, I was completely exhausted. I couldn’t knit or eat, let alone cook anything. Ron and I had popcorn for dinner. I walked around the house, wracked with guilt that I didn’t make Matt go to the doctor sooner. I knew that swelling in his ankles and feet was a bad sign, but I didn’t do anything except encourage him to eat better and lose weight. I should have dragged him to the doctor months ago. It doesn’t matter that Matt should have been responsible for his own health; I’m his mom. I’m ultimately responsible, because it’s my job to take care of both of my kids, regardless of their age.

For now, I have to keep those feelings compartmentalized and take this all one day at a time. I do not get the luxury of “losing it” quite yet. I talked to Leigh yesterday and told her that I’m afraid to cry because I’m not sure I could ever stop, so I just swallow it down and keep moving.

These are the things that make us parents. Anyone can take a kid out for ice cream, or buy them things, or spend time at an amusement park. It takes a lot more to sit with your child while they are sick, worry over them, and do what’s best for them, not you. It is not biology, it is beyond genes. It is being present for the bad stuff, not just the good.