Wednesday, June 2, 2010

Got To Get It Off My Chest

I was robbed. Cheated. I had a beautiful son and now he's gone. Why didn't anyone listen to me? I was his mother! I knew something was wrong. I've told Tommy's story before, but this particular circumstance will not stop nagging me. Yes, it's haunting to have seen him die in front of me, but worse was sitting in the hospital over a weekend and being ignored.

The doctors rounded and practically patted me on the head telling me all was well. But they weren't his doctors. I guess everyone thought "Hey, it's Tommy. He bounces right back. He's got his own way of doing things, but he's always okay." I kept believing people when I was told he had overworked himself learning to breathe without a trach, that we'd rushed him.

My ears heard this. My head found logic in what I was told, but my heart, my mommy-gut was screaming that something wasn't right. How could a child go from being completely weaned from oxygen and having his trach removed and doing the best he'd ever been health-wise in his life, to a week later, gasping for air, needing oxygen at odd moments and sleeping nonstop for 3 days? He was literally falling asleep sitting up.

I begged for a white blood count, but I was told one had been done when he was admitted Friday night. So what was the harm in doing it again? Oh, it was the weekend. Everything comes to a halt on the weekends in a hospital. Really, it shouldn't. People don't stop being sick because it's a Saturday.

What if they'd taken me seriously that weekend? Instead of waiting until Monday, Tuesday and Wednesday to wonder what was going on and do this little test and that little test. They would have discovered what we had to learn in an autopsy.

My son was in heart failure. He had bronchopneumonia and wasn't being treated for it. Would an echo have mattered? A chest xray? How about a little stick to draw more blood and start antibiotics right away, just in case, on Friday night instead of Monday? Then when his IV blew out on Tuesday, just leaving it out because he was well enough to go home the next day anyway.......

He went "home" alright.

I was so mad and frustrated that weekend. He'd been in the hospital a month and we finally got him home, only to go back 3 days later. The happiest day of that summer and the saddest day of my life were exactly 7 days apart. I didn't take one picture of him those 5 days in the hospital. He was so, so sick and unresponsive. I knew there would be another day for pictures. I just didn't know it would be at his funeral, taking pictures of him for the very last time.

I have no closure. There are days the "what ifs" tear me apart. What if we had been on our regular floor with nurses that knew him well? What if I had taken him in to the ER Thursday night instead of Friday afternoon? What if I had a screaming temper tantrum in his room until security was called and MADE them find out why he was so sick?

I feel like the whole world dropped the ball that weekend. So many missteps. So many things that could have been done differently. I was so sick to my stomach. My mommy-gut knew things weren't right.

I was told he was depressed. They'd send in a Child Life Specialist. This from the cardiologist on call that weekend. I blame her. Never liked her, now I have a reason to despise her. I don't think she "killed" Tommy, but she sure didn't do a whole lot to save his life either.

If one small thing had been changed, would I be awake in the middle of the night because I was filling his feeding pump instead of blogging about how much I need him back? About my broken heart?

It's not healthy for me to keep all of this inside. It has to come out. I have to say how I feel or I carry it with me and eventually, it overcomes me.

The attorney we hired dropped the case after a year. No explanation, just that they were not the ones for the job and I had 3 years to pursue it if I chose. We chose not to explore that option again. There would be nothing to gain and it would not bring him back.

Deep breath.

I miss you, sweet boy. I'm sorry. I wish I had known you were dying. I wish I had taken your picture. Held you one more time. Told you I loved you again and again, even more than I did. I wish I had never washed your Wub. Never washed your clothes. I can't find your smell anymore.

Most of all, I wish you were still here.

3 comments:

Susan said...

I'm so sorry Rene. (((((HUGS)))))

saywhatyouwill said...

rene, this is heartbreaking to read.

once you are their client, lawyers can't just withdraw without a good reason, and they have to tell you that reason. can you at least get that from them?
clare.x

Nancy said...

I'm glad that you took the time to write all this down. Get it out. Don't keep it in. I can't know exactly how you feel but I sure know how mad I was when Jessica's shunt was cut during surgery and she hemorrhaged out. She should have died then but hung on. She hmorrhagee for 5 days, had seizures and a blood infection. She was finally extubated 10 days later only to be blind and paralyzed. Yeah, I understand the anger at what medical mistakes can do.

I hope it helped you to get it out. I hope you can find some peace in knowing that Tommy is no longer suffering. Nobody can ever hurt him again. Jessica is getting tired. Tired of the pain, the hospitalizations, the needle pokes that go bad, the doctor's visits, the shortness of breath, the heart arrhythmias, the migraines, swollen feet and not feeling up to going anywhere. She says about her cousin who died from a brain tumor 1 1/2 hears ago... "at least Marcus doesn't have to deal with all this anymore."

My heart goes out to you and I hope and pray that as you go through the grieving process that you know that you aren't alone. Tommy is still near you and is probably performing miracles every day. I hope you feel him near you. You also have a lot of friends online who love you and are here for you. I hope you have a supportive family and friends to help you along the way.

((((hugs))))

Diagram of Tommy's Heart Defects

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