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Sunday, November 01, 2009
Hemophilia always has a way to throw a curve ball at you. Sometimes every month; sometimes years go by. We were thrown one last Monday.
Tommy moved back home with us late August (but still attends college). At 4:30 am he woke us up, complaining of stomach pains. "I think I'm bleeding inside," he said. He said he had thrown up.
I asked if he were vomiting blood-- no. "You probably just have indigestion," I mumbled (knowing he likes to eat a lot of pizza, soda and such), and, being the concerned mother I am, suggested he go back to bed. His being up late wasn't too much of a concern as he always keeps Vampire Hours.
He came back at 5:30 am. "It's killing me," he said tensely, "I have to go to the ER--now." Before I could convince him it was still indigestion and that he should go back to bed until I get up, he went downstairs, got into the van and drove himself to the ER. I was happy he was taking control of his health care and went back to sleep, convinced it was nothing to really worry about.
Then I awoke at 7, showered, got dressed, and headed for the office. Around 10 am, I got a call on my cell: "This is Ana Jaques Hospital; your son was admitted with appendicitis. Do you... want to come see him?"
I couldn't believe it! Appendicitis? I had a couple of thoughts: what an idiot I am! What kind of a mother am I? I am so proud of Tommy for following his (gut) instincts.
En route to the local hospital, I got a call that he was being transported via ambulance to New England Medical Center, his HTC. I drove so fast I actually got there before the ambulance. A little bit of guilt goes a long way.
I learned a lot that day. Tommy is very grumpy when ill. Doctors are getting younger and younger (as I get older and older). The ER is a super busy place, filled with people in pain, discomfort. There's no privacy. And no one was going to help me unless I practically shouted, "Will someone give my son another dose of morphine? Please?"
Seeing my son lie there, in pain or dozing on heavy painkillers, I recalled our first weeks with our first born. The hospital visits, the tears, the feeling of being lost in the hospital maze. Time has a way of blurring all this. What was it I once wrote in my book about navigating the ER? Stand up for your rights; tell people what you need?
Many people came in to look at Tommy, and all asked the same questions: When did it start hurting? Did you throw up? Does it hurt here, or here? Can I take a look? Can I listen to your heart? When did you take factor?
After the third doctor, I had to tell Tommy that this is a teaching hospital. All these doctors need to learn from him in order to become better doctors. He tried to understand, but from his point of view, it seemed no one was listening to him as he had already told people the answers to these questions.
Our hematologist showed up and took charge. His factor was ordered. I was surprisingly pleased to hear Tommy say that he infused himself at 2 am (the pain had started at 1 am). He tried to tough out the pain for three hours before he woke me up.
By 2 pm he was taken for surgery. All went well and in less than an hour the appendix was out and he was in recovery.
He's doing great now, just sore. He plans to go to school tomorrow. Amazing. A stitch in time, even with hemophilia, and he's back on his feet. And I realized how much we can be lulled into thinking something is not so serious, how much we want to deny what's right in front of us. Luckily, Tommy chose to listen to his body, follow his instincts, and not heed my advice to wait and see.
I was bemoaning what a "bad mother" I was while at the NHF meeting this week, and bumped into my friend Melissa Penn, mother of a child with hemophilia and executive director of the NYC Hemophilia Chapter. She reassured me with the thought that this was the ultimate test: Tommy had learned when in doubt, infuse (and go to the ER), even when it's your own mother telling you not to worry. We had both succeeded.
Parting Shot: Last week I attended the Children's Cancer and Blood Gala Ball in New York City and met Ted Turner, founder of CNN, who received the Breakthrough Spirit Award, which I had received last year. His new book, Call Me Ted, was given to all attendees. The event raised over $1 million for cancer research and to help patients unable to afford treatment.
Great Book I Just Read
Things Fall Apart by Chinua Achebe
This 1958 novel is a classic in African literature. This is the story of Okonkwo, a wealthy and respected warrior in a Nigerian in the 1800s. He is proud and masculine, and has three wives and many children. The first half of the book details his life and gives great insight into the complex culture of African tribes and Okonkwo’s unwavering desire to be powerful and manly, which makes him the tragic hero. The second half reveals how the coming of the white man changes African lives forever. Christian missionaries move in, and one, Mr. Brown, is especially kind and tolerant. Okonkwo suffers humiliation when his own son decides to become Christian. Okonkwo clashes with everyone and finds himself a relic, as change and modernization take place before his eyes. The book was written as a response to early Western literature which portrayed Africans as uncivilized and primitive. Four stars.
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