Friday, October 30, 2009

Deja Vu

There's a family in Charleston at MUSC that is facing some very scary things tomorrow. Their son is HLHS and can't make it off the vent. Tomorrow he is having 3 surgeries. A Nissen Fundoplication, a Gastronomy Tube placed (G-tube) and lastly, tracheostomy.

I know what this family faces. Three years ago, I walked this road myself. It was long, dark and lonely. Now that I've moved back to KY, I can no longer just go over to MUSC and visit the families like I used to do. I miss it terribly, not being near the hospital. It was my second home and comforting other parents going through what we had faced was not only therapeutic, but became what I want to do with my life. NO parent should have to face going through what I did with Tommy, before he was born, during his life and in his death. But his life passing through mine made me who I am.

I walk through my life with a sense of humor. Sometimes it is a bit wry and askew, but I'm not exactly one to conform to the masses either. Remembering Halloween right after Tommy was born, seeing the scars all over his body and the fresh zipper down his chest, I joked we should paint him green and let him go as Frankenstein. Unfortunately, he was very, very sick at the time and my humor was there to rescue me from my misery. A year later, discussing what our wee one should be for his first "real" Halloween, we tried to figure out how to incorporate the machines keeping our baby alive. Trach babies make a gurgly sound when they breathe sometimes. Perfectly normal. Just a little secretions hung up in the trach. I seriously considered a Darth Vader costume, but when I acquired the little Vampire costume, it was a done deal. He was the cutest little vampire on Earth.

I don't know the family at MUSC personally. I wish I did. I would bend over backwards to be sure they had all the help and moral support they need. My emails will have to suffice. I have such a passion in my heart to reach out to families with kids that have special needs. I don't know what I would categorize myself as. Part counselor, part researcher, part well of information. I want to turn this into my career, but can't seem to catch a break. I was accepted to college early in the year, but as the admission date got closer, it became very clear that we financially could not swing it. Even though I qualified for financial aid, transportation was a huge issue. I already travel 45 minutes one way to work. Attending the college where I was accepted would have doubled that and the amount we pay for gas. But I'm NOT giving up! I just need to broaden my options.

My heart, my dream, Tommy's legacy lies in reaching out to other parents. I want to learn ASL well enough to teach it, I want to attend IEP meetings and make sure the parents get what their child needs, I want to sit in hospital waiting rooms with moms and dads while their child is in surgery to remind them to eat, have something to drink and to talk to someone who has been in their shoes. I dream of a day where I can support my family financially by doing what I dream.

Today I dream about reaching out to that family in Charleston, with a sense of deja vu. Knowing what they are facing and wanting to let them know I'm here. That's what I wanted when I was going through this with Tommy. I wanted information and I wanted to hear what it was REALLY like, not what the doctors told me, but what a mom would say. Now I'm that mom. I have a lot to say. Just ask.

Wednesday, October 28, 2009


I fully intended to blog today. I have a lot of my mind that has been causing me stress. I needed to vent. And then I saw the words I hate to see. "Pray for Stellan". Oh no. I flew right over to their blog to check up on the sweet baby I've been following for months now. Stellan battles supraventricle tachycardia (SVT) and this is looking like the worst bout yet. I still have a tear stuck in the corner of my eye from reading about how things changed so quickly for him last night.

Stellan turns ONE tomorrow! Please pray that his little body can snap out of the too fast rhythm so that he can enjoy his birthday.

Having a heart child is not easy. It's a daily struggle. What Stellan is going through is what my own son, Brandon, potentially faces. Although Brandon is at low risk, his IS at risk. We've taught him to tell us if he feels like his heart is beating too fast or if he feels "butterflies" in his heart, or if he's in any pain. So far, he's told me twice. Both times we took his pulse and it was a little on the fast side, but completely normal. I'm very glad Brandon is aware of his body and tells us when things don't feel right. Poor Stellan doesn't have that option yet.

Heart defects come in so many forms. From the very serious single ventricle defects like Tommy suffered from to short PR intervals that Brandon has been diagnosed with and everything in between. Too fast rhythms, too slow. Holes big and small. There are so many! Here is a website that lists several heart defects. Tommy's is listed under Single Ventricle and is called Double Inlet Left Ventricle if you'd like to read about his. To read more about Stellan's condition, I found this link.

I wish I could reach out to every single heart parent in the world and scream that I understand. I pray for MORE research, MORE awareness, and someday a cure. Nobody knows why in those first early weeks of pregnancy does the heart not form properly. It's so early in the pregnancy that many are not even aware they're pregnant yet. Heart defects don't discriminate.

I am just one voice, asking for prayers not only for a little boy, but for ALL kids out there suffering from heart defects. Tommy was blue his entire life. I never got to hold and play with a healthy pink baby. I've seen him pink twice. Both times he was sleeping, on 100% oxygen and it was only for a moment. A rare glimpse at what would never be.

Tommy has so many playmates in Heaven now. Please pray he doesn't get any more for long time. Especially Stellan. Pray not only for Stellan, but his wonderful mother who shares his story with the world and for his family that loves him very much.

Wednesday, October 7, 2009


Am I coming to terms with the horrors I saw that day? Am I ready to deal with them? I don't know. Fact is, I can't get the images out of my head. The look on the medic's face as she looked at me. It was a pitiful look like she knew there was no hope and the doctor was just placating me.

The determination on the doctor's face as he realized Tommy was in full arrest and started CPR with a vengeance. Then switching off with nurses and medics. All of them sweating profusely from the sheer force of trying to save my boy's life.

The sound of anger in the Attending doctor's voice as he asked for a cuffed trach tube, but none could be found on the crash cart. Wanting to know why he didn't have IV access and had to waste precious time getting in a line.

The sound of the inncessant beeping of the heart monitor as it began to flatline. The look on the nurse's face through the window as she tried to get me to leave the room. HELL NO!

One of the medics shouted above the fray, wanting to know what Tommy was on "contact" for. I was the one shouting back pseudomonas. He flung his mask and gown off to get closer to Tommy and work harder.

I shouted his diagnosis to the medics that did not know him. I gave his history and made corrections to what was in his chart. I wanted more than anything to jump into the middle of it all and save my son's life.

Through it all, I was calm and in complete denial. Tommy had coded before. He'd been sicker. I kept wondering why they weren't moving him to the OR to start heart surgery. I was guessing he had to be stablilized. I watched my son's naked body with blood on the sheets from the emergency IV with someone compressing his heart while another breathed for him with an ambu bag while another gave shots of life saving drugs trying to restart his heart. Except watching it all, I didn't realize his heart had stopped and that meant death. I thought his heart was having trouble because it was sick, not because his body was dying.

Even when the attending called in the chaplain, I would not give up hope. My son was a fighter and had been through so much. He couldn't just die like that. He'd been fixed before. Pulled through when we thought there was no hope. And then he said it. "Call time". 10:50pm. The noise stopped, the room full of people filed out. Gone. He was just here. Blowing me kisses and signing "I love you" from across the room. My poor, sick baby. I denied it all the way until the end. I never gave up on him.

It's been over a year. The scene plays out in my head on a daily basis. I block it out the best I can, but when I am alone at work and the rain falls outside, the images will not go away. When we drive through certain parts of town (near the hotel where we stayed during the funeral) feelings of grief and horror rush back to me.

I talked to Rob about all of it and think it's time to start seeing a counselor. I saw one before but had dealt with all I could deal with at the time. Now it's time to face the hauntings.

Thursday, October 1, 2009

Being Sick Has its Benefits

So this is what life is like? Working outside the home, cherishing my days off and trying to fit in sleep and a little fun. I have a cold today and I spent the entire day alone.

I just realized that it has been nice to be sick. No, I am not enjoying the headache or the fact I can't stop coughing, but that I got to spend a day alone. Originally, I was to head into town to run errands all day long, but when the alarm clock rang this morning, my body responded by putting a vice grip on my head. Not a fun way to begin my day. I sent Rob to run the errands alone and I burrowed back under the covers.

Around 1, I was able to climb out of bed long enough in search of ibuprofen and caffeine. I then popped one of my favorite movies into the dvd player in my room and had a peaceful afternoon. By the end of the movie, my headache had diminished. I still have my annoying cough, but I will live.

My mother in law happens to be at her mother's today. Rob's grandparents. They live in the house in front of ours and the boys have to pass by there to get home after getting off the bus. I called and gave her a heads up that as soon as the boys saw her car that they would probably make a beeline for her. I was correct! About five minutes after the bus dropped them off, my phone was ringing. It was Matthew requesting "pleeeeeeease can we stay over here with grandmaaaaaaaa?". I already knew I was letting him stay (so I can have MORE quiet time!), but I had to mess with him just a little. I asked him about his day, his school projects. Did Brandon have homework? Did he? I managed to drag it out about 5 minutes before I told him yes, he could stay. He was suspicious, so he asked for how long? I never really gave him an answer, because what he doesn't know is that we've been invited over for dinner tonight, so he was staying late anyway. I just want to keep him on his toes.

Most people would see having a cold on their day off as an inconvenience. Why waste a day off doing nothing when there is so much that can be done? It has been the best way to waste a day in my opinion! Why be tough and force myself to run errands with a headache? Instead, I took the time for ME. I have never been one to do much for myself. I've always put others ahead of me. I'm a mom, it's what we do. I don't particularly like being sick, but for once, it was nice to tell the world to go away. Maybe one of these days I will figure out how to do that when I am not sick.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries