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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

I am exhausted. So very exhausted. I am pleading to myself that there isn’t something wrong; that the whimpers and small cries I hear as he sleeps aren’t there and that it is from sleep deprivation. I am drifting in and out of sleep on the baby glider that still graces his room even though he is five years old, not because he lets me hold him anymore but because it makes a nice place to read books and for nights like tonight, when we spent most of the evening and into the night at the emergency room. But they sent us home. They told us the scan was clean.

But I know, deep down, that something isn’t right. That five-year-old boys don’t cry out in severe pain for no reason or that they don’t walk about without screaming. He tosses and the whimper escapes from him again.

I plead with myself to go to sleep. I beg my body to let go. I am so tired. I am pleading. With who, I don’t know. Most likely myself.

And the wheels beginning turning. I should have been firmer with the emergency doctor. I should have stomped and screamed and made them listen. The doctor told me that it must just be a virus; some kids don’t want to move certain body parts when they have a virus. I sheepishly nodded and didn’t fight. I was exhausted. I had so little fight in me.

They did the CT scan. They said it was clean. What would I be fighting against, what would I be fighting for? Am I fighting my own guilt that we have found ourselves in the emergency room again because clearly I am overreacting and nothing is wrong regarding his bleeding disorder.

I packed up the bag and loaded him into the red wagon to leave the emergency room. And here I find myself in the deep hours of the night, exhausted and replaying the conversation with the doctor, listening to him cry in his sleep. I must have fallen asleep. My pleading worked or my overly exhausted body gave in because I can see flashes of light peeking in from the sides of the blackout curtains in his room. He is awake but not getting out of bed. He is crying and is repeating over and over again that he cannot move, that his leg still hurts. He rips the covers off and shows me, yet again, that it hurts here, pointing accusingly at his right hip area.

You should have fought, I tell myself. You should have listened to your gut.

This isn’t a virus. Something is clearly wrong. I check the time. The HTC doesn’t open for another hour. So we wait. And as soon as the clinic opens I am on the phone waiting for the reception desk to answer. I ramble out our story and am told a nurse will call me back. We wait. He still cannot move. The nurse calls back. I ramble some more. She is going to talk with the team.

The phone rings. The nurse sounds apprehensive. The emergency room was wrong. They looked at the CT scan again.

His has a massive bleed in his right hip.emily_painter_boy-jpg

She mentions an orthopedic surgeon and not to let him eat or drink. I begin stuffing clothing into my bag.

I knew deep down that something was wrong. The guilt is overbearing. Why didn’t I push harder?

One of the largest takeaways I have received from the bleeding disorder community is that I am my child’s best advocate, that I know him best and I will fight tooth and nail for him.

But what happens when you fight, when you do everything by the book and the doctor says that everything is fine? What if the doctor is wrong? I have learned to how advocate for my child and I did. I called back and didn’t take no for an answer.

But what I kept thinking after he was admitted and had surgery were the faces of the parents and the kids that were in that emergency room waiting room that night. What if the doctors told them that their little one was fine, that whatever was ailing their child would be better in a few days, and they didn’t know to stick up for their kid?. For many of us in the bleeding disorder community, a few days can lead to big and scary consequences.

So I stood up and I didn’t take no again. Although I pleaded with myself that everything was fine, that it was just a virus, that strange things happen to little kids and all the weird germs that fly around.

But Logan needed me. He needed me to listen and to trust him. And I know that I need to keep questioning, to fight back the exhaustion because my kids need me when doctors are wrong and bleeds happen.

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Emily, her husband, Geoff, 5-year-old son, Logan, and 2-year-son, Ryan, live in Minnesota.

*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

 

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