So then something scary happened, but the first thing you need to know is that Nora is fine.
Backing up about a month: I came home from an exercise class one morning to find that Nora had an odd rash on one hand. It looked like broken blood vessels, but seemed to have come out of nowhere-- Rich said she hadn't hurt herself, or at least hadn't complained about anything. I called the doctor's office, and they said it could be hand, foot & mouth disease or an allergic reaction. A google image search convinced us it was neither, and we decided she had just smooshed her hand somehow and stoically resisted complaint. Here's a picture of what her hand looked like-- I emailed it to a friend who is a doctor, who shared it with another doctor friend, and everybody agreed: post-smoosh hand.
It took a long time for the little red specs on Nora's hand to disappear, but I didn't think much more about it since she didn't seem to be in any pain. Meanwhile a couple of other little red specs appeared on other parts of Nora's body, but I told myself she had just rubbed against things-- she seemed to bruise easily, but since I've never had a toddler before I couldn't tell whether she was bruising more than other kids. I kept asking other parents whether she seemed to have more bruises than normal, but my friends and even parenting website forums said that being banged up is just part of being a toddler. No red flags went up for me.
But on Wednesday I kept Nora home from daycare so that I could get her to the doctor to look at an itchy rash that had developed on her chest and neck. The doctor-- wonderful and very observant Dr. DeBlasis-- said it was just an environmental allergy, something they'd been seeing a lot of in otherwise non-allergic kids. As we were finishing up, I said, "By the way-- can you take a look at these little specs? I think they're broken blood vessels." Dr. DeBlasis took one look and said the spots could be a sign of low blood platelets, and sent us to Children's Hospital to get her blood tested.
We went and got the test done, and I dropped her off at the sitter's and went to work. A couple of hours later I got a phone call that something had gone wrong with the test, and I needed to take her back and do it again. I waited until after work, drove back down to Children's, and let my poor kid get poked and prodded yet again.
Can I tell you that even at this point, no red flags went up? I had done some research about what low blood platelet levels could mean, and there were some bad possibilities-- I won't even list them here. But I looked at my chunky, energetic little kid and figured it just couldn't be anything serious.
Fast-forward a couple of hours after the second blood test. The doctor was supposed to call me as soon as the test results came in, no more than an hour after it was done. As time passed, I got more and more nervous about possible negative diagnoses. I carried my cell phone everywhere until I finally took Nora up to go to bed.
Five minutes into our bedtime routine, Rich came upstairs with the phone and told me we had to go to the hospital. I talked to the doctor, who explained that a normal blood platelet count was anywhere from 100,000 to 400,000-- and that Nora's was 6,000. Platelets are necessary for clotting, so a low platelet count is a dangerous situation; we had to go right to the ER, where a hematologist would be waiting for us.
We spent about 6 hours in the ER, with various nurses taking turns trying to draw blood and insert a stent for an IV. It took five or six extremely traumatic attempts before they managed. With little kids, they bring out a long white cloth and sort of wrap the kid up like a burrito so that they can't flail around while they're searching for a vein. I was allowed to be up at the top of the table where her head was, and all I could do was stroke her head and whisper what a good girl she was and talk about how when we got home we'd go on the swing. Meanwhile she screamed "All done all done all done!" This is the worst thing I've ever experienced.
Finally the test results came back: Her blood platelet levels had dropped from 6,000 to 4,000. We were admitted to the hematology ward.
A detail that's important to understanding what kind of kid Nora is: Despite the trauma and crying involved in the repeated blood draws, two minutes after the nurses left the room she would be running through the hallways, waving at everyone who went by and doing little dances. It was almost 4 am by the time we got a room in the hematology ward, but aside from a brief cat nap in my arms (attenuated by the final blood draw), she was wired the whole time.
Anyway. We got admitted to the hospital with a tentative diagnosis of ITP-- Immune Ideopathic Thrombocytopenic Purpura. In ITP, the immune system turns against the blood's own platelets, and the bone marrow can't replace them fast enough to keep the blood clotting properly. The body constantly endures microtears just from day-to-day living, but normally the platelets rush in to prevent any damage from happening. In ITP, you see those tears in the form of broken blood vessels, but the true danger is internal bleeding. A knock to the head could cause bleeding in the brain.
Ok. So in the morning, they started the treatment for ITP, called IV-IG-- an infusion of immunogobulin via IV. It took six hours, during which Nora was hooked up to an IV and various wires monitoring her vital signs. It was a rough morning for my active toddler.
Normally they wait to test the results of the treatment for 12 hours to give the IG time to work, but they went ahead tested her about 8 hours later so that we wouldn't have to stay until midnight. In order to be released from the hospital, her platelet numbers had to be at 20,000 or higher. Nora's numbers finally came back: 35,000! The positive response to the IG confirmed the ITP diagnosis, and the only thing to do now was wait until the platelet level went back up to normal-- probably over the course of a few weeks or even months.
The good news is that this is an acute disorder-- meaning once it's done, it's done. There's no indication that Nora will have any type of immune disorder after her platelet levels come back up. They don't really know what causes ITP, but the theory is that a virus somehow confuses the immune system into attacking the platelets. It's a fluke.
So. We gratefully went home. We slept in the next morning, and then spent the whole day doing fun Nora things. First we went and bought her a cute little helmet-- she has to wear one for awhile until her platelet numbers are high enough to protect her from bleeding in the brain. Then we went and had strawberry pancakes, and then we went to the Lunken Airport playground and fulfilled our promise by pushing her on the swing for about two hours. We got to see some airplanes coming in for a landing, another treat. So it was a very, very good day.
Our girl will be back to full strength before we know it, but in the meantime, we would appreciate some prayers and good thoughts sent her way.


2 comments:
Your post is lovely.
I am glad to have a full account of what happened to Nora so I won't get mixed up in the future.
I like your description of how much you love her. It is something over which we have no control, and it is fierce and even more than you would be able to imagine. Even my grandmother-love of her is fierce. And I do know that she is remarkable.
I'm so glad she is ok. We will keep all of you in our prayers. She is such a great lil trooper! I remember feeling the same way when Ashley had to have a thyroid scan at 23 months. They had to inject her with dye and after the second try (oh it broke my heart to see her cry) I told them they had one more shot at getting the IV in before I took Ash off the table and left. Lucky for Ashley the next nurse got it, I was in tears. It's scary waiting for test results. It feels like the whole world is stuck on pause. But I'm glad to hear she will make a full recovery. The helmet is cool and totally Nora. She has the cutest belly! Sadly it's not as cute on me. :) Have a great Mother's Day you (and Rich) deserve it.
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