My son, five years her senior, had gone through just this sort of thing in the past. It normally signaled some kind of stress for him. He merely needed rest, and he was up in a day or two. With that in mind, I gave M a couple of mental health days.
After her days of rest, she seemed better. She was eating. A lot.
We joked that she was eating like she had a tapeworm. All of her friends were starting to get thinner and taller, and she seemed to be doing the same thing. "It must be hormones," I thought. I certainly wasn't worried about it. We watched her eat and eat and eat. She never seemed to gain weight.
The Sunday after her mental health days, M went up to the front of the church to sing in the "choir." I put choir in quotes, because it is more like a rock group at the mass that we attend. It's very loud. About halfway through the mass, I saw her sit down in the chair normally reserved for a girl who had intermittent leg pain. She looked like she was going to throw up. Then M swiftly got up from the chair and passed through the door to the sacristy. For those of you who are not Catholic, the sacristy is the back of the church, behind the "stage" where the priest gets ready before mass.
At this point I was anxious. I decided to count to 100 before charging up in front of everybody and running into the sacristy to see why my daughter went in there. At 87 she emerged, with a water bottle in her hand, not looking much better, and stood for the remainder of the mass to sing.
"What was that all about?" I asked her on the way home.
"I don't know," she said. "I just felt dizzy. I feel okay, now. It was weird."
We decided that she probably was thirsty and that she had better stay hydrated.
Don't judge me. M had always been a normal kid, health wise. I had no reason to suspect a major diagnosis was coming.
The Wednesday and Thursday after mass, she felt crummy again. I let her stay home. She was eating and staying hydrated. There was no vomiting. Just malaise, I thought.
The following weekend was Easter weekend. If you are hardcore like me, you attend the Triduum: Holy Thursday, Good Friday, Easter Vigil, and Easter Sunday. Our particular church has a large group of hard core "high holiday" Catholics in it. Both of my kids are altar servers. They both volunteered to serve during the Easter Vigil mass.
The Easter Vigil mass, for those of you who don't know, is a big, stinky deal. It usually lasts about three hours. People are baptized and confirmed into the faith that night, on top of several readings and the regular mass stuff. Also, there is a ton of music. M's job was to hold and carry around a big-ass candle, weighing about 10 pounds. Carrying a candle of ten pounds for three hours would normally not be a big deal for her - M is the strongest and most athletic member of our family - but tonight, it gave her some grief. At one point, she stumbled and nearly fell off the stage. But, you know "No harm, no foul." It just looked like a stumble until I put the pieces together later.
The Tuesday after Easter, she did not feel well again. Being a high school teacher, I asked her all the typical health and eating disorder questions.
Me: "Have you been peeing a lot?"
She: "No."
Me: "How about in the middle of the night?"
She: "Only once in a while."
(I later found out that I was asking the wrong person. Her brother's room is right next to the bathroom. After she was diagnosed, he told me that she was going three or four times a night, waking him up in the process.)
Me: "Have you been throwing up?" (I'm thinking eating disorder. She eats so much and she's so thin!)
She: "No, but I've been nauseous." (Phew! She has no idea what I am talking about!)
Mono had been going around my son's school, and my daughter had been exposed to a number of carriers. After all, we had spent time with the FIRST robotics team every weekend for 9 weeks. I decided to call her doctor and make an appointment to see if she was okay. He was available the next day after school.
When she woke up the next morning, she fell down the last four steps on the staircase. Now this was weird. She is the most graceful person we've had in our family for three generations! I was worried. She looked pale. I was glad we were going to see the doctor.
We brought her after school. My son installed himself in the waiting room while my daughter and I went in to see Doctor G. Doctor G. is a younger guy, and I love him because he never claims to have all the answers. He describes options, risks and opinions as if we are reasonable adults. He speaks to my children with respect. Before we see Doctor G, my daughter got her height and weight measured. This is the point at which I start becoming a shaky, irrational mother.
M weighed 83 pounds.
"So?" you might be thinking, "That sounds like a normal weight for an 11-year-old."
Well, maybe it is if that 11-year-old didn't weigh 103 pounds seven months ago at her last check up.
20 pounds. She had lost 20 pounds.
"Maybe we read it wrong at the last weigh-in," the nurse suggested.
"No," I said, tight-lipped, "I am pretty sure you didn't."
I wait in concerned silence for Doctor G. to arrive.
After weighing her again, and confirming that she does, indeed, weigh 83 pounds, Doctor G asked questions of M and myself. We answered the questions as best we could. Doctor G decided that we needed to run some blood tests. He wanted to test for diabetes, thyroid, and mono. We were sent to the lab immediately.
Here is where the fun begins. M is absolutely TERRIFIED of needles. This is not funny. She was fine with them when she was little, but around the age of six, she suddenly developed a fear of needles and dentists. This is not normal for me. I am a 'suck-it-up-and-deal-with-it' person. I have to work very hard to muster up any sympathy for my child in these situations. I actually brought her to therapy to help her come up with coping strategies because I am so inept at providing with the tools necessary to calm a panicked child down. They're just needles! It's temporary! Deal with it!
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| What a phlebotomist looks like to M. |
I will spare you the details about how M kept moving her arm away from the poor woman trying to draw her blood, crying, and periodically shrieking. Let's just say it took nearly two hours to get the blood out of her. I was physically and emotionally drained, and so was M. I have no idea how the phlebotomist fared. I assume she went home to a stiff drink and regaled her seven cats with stories of my screwed up child and her inept mother.
On the ride home, M asks about each of the diseases for which she had been tested. I explain to her about hyperthyrodism, which I had after the birth of her older brother; and mono. When I began to describe diabetes, her older brother said, "Diabetes would be your hell, because it's needles, needles, needles, all the time."
M's response: "Go mono!"
After a draining afternoon (It was nearly 7:00 pm by the time we got home), we all ate a meager dinner, and M went to bed at 8:00 pm. I was exhausted. I took one look at my pile of papers to correct, and realized that I was in no fit state to properly evaluate the writing assignments my students had turned in that day. I always hand back my assignments the next day, but I just couldn't summon the energy to lift the stack out of my satchel. I decided to have a beer.
At 8:45 the phone rang. It was one of the Nurse Practitioners at the clinic. She dropped the bomb. M had diabetes. Could I please bring her in to see Dr. G first thing in the morning?
Of course I could.
I hung up the phone and told my husband, B. I cried. We sat on the couch holding each other. We began to mourn the loss of a potentially easy and wonderful life for our daughter. We agreed that it sucked, but we would deal with it.
At 9:05 the phone rang again. It was Dr. G. "I have looked more closely at M's numbers, and I need you to take her to the Emergency Room right away."
The Mama Bear in me came out.
"No! Absolutely not! She has had a rough day. She's sleeping. She needs her rest. Let her be normal for one more night. She can come in tomorrow morning as we planned."
Silence on the other end. Then, "Ursula, I know how you feel. I am a parent, too. But knowing what I know, it would be irresponsible of me to say that you can keep her at home even one more night."
His words frightened me, not just because of their content, but because he had used the same quiet, calm, voice that I use when I am very worried. I knew we had to go.
I hung up the phone and told B what was happening. I called work to arrange for a sub for the next day while he woke M and got her ready to go. I could hear him telling her, "You'd better bring a book. They usually take a long time getting you in to see the doctor..."
I woke our son and told him that we were taking M to the hospital. His face went ashen at the diagnosis. I told him we would keep him posted and see him in the morning. Then we left.
Our hospital is about 25 minutes from our home. When we arrived the waiting room at the ER was packed with people. There were roughly 40 people there. Some were in wheel chairs, some were vomiting, some were holding their heads. Some looked fine. It was Wednesday, April 15th. Were these people looking for a good excuse for not filing their taxes on time?
B dealt with the paperwork and check-in for M, while she and I found an empty seat. She placed her book on the seat next to mine and went to the bathroom. Before she had even returned, they called her name. I knew this was not a good sign. I know what triage is, and I know that M was just escorted in before 40 some-odd people.
She was brought to a bed and asked to lie down. They tested her blood glucose. 635 mg/dl. She also had these things called ketones, which I had never heard of.
I only knew enough to know that was bad. It would take a few days before I realized how bad it was. I have since heard about people bringing in their kids to find bg levels of 900 or more. I am astounded at how resilient the human body can be.
I have to say that the ER doctor and the nurses were absolutely excellent with M. One nurse, completely sympathetic to M's fear of needles inserted a port so that blood could be drawn from it, and all shots could be administered into the same place without her feeling it. The doctor called me "Mom."
"Mom?" she said, gesturing me out into the hallway.
"Yes?"
"We have her blood glucose down to 450, which puts us in a position to be able to transport her."
"Why do we need to transport her?"
"Our facility is not well-equipped to handle children with diabetes. We would like to send her to DHMC."
(Using my quiet, calm voice) "Will this be by car? Or by ambulance?"
"By ambulance"
"Okay."
This is the point at which I realize I must call my mother. She needs to know so that she can be prepared to assist me with whatever plans I need to make for my son. Plus she would be extraordinarily pissed off if I didn't call her.
As I picked up the phone, the doctor showed up again. "Mom?"
I entered the hallway, saying, "Doc, I think we are beyond the possibility of you surprising me. Just tell me what it is."
"There are no beds at DHMC. We are going to have to send her Children's in Boston."
(Calm, quiet voice)"By ambulance?"
"Well, we are having trouble locating an ambulance at this time. If we can't find one within 20 minutes, we are going to send her by helicopter."
"Oh. Okay. Keep me posted."
I called my mom. She could tell, not just because I was using my quiet, calm voice, but also because I was calling close to midnight, that I had something important to tell her. I vaguely remember her saying "How did this happen?"I told her I would keep her posted and call her in the morning.
In a few minutes, the ambulance was arranged. Two men I had never seen before arrived to take my daughter away, and my husband called 'shotgun' on the ambulance. That left me to go home, pack clothes, and tell my son that we were going to be gone for the next few days.
Our lives would be changed forever.
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