Saturday, May 26, 2007

Transient Erythoblastopenia of Childhood

As many of you know, Josephine spent three days at Children's Hospital this past week. In the end she was diagnosed with Transient Erythoblastopenia of Childhood (TEC), a type of anemia. We are now at home and Josephine is taking a long, deserved nap. I'll write the whole story and put videos at the bottom (if I can figure out how to put them in the same post). The story is long, but I use this as my journal in addition to letting everyone know what Josephine is up to, so it has more details than you may care to know. : )


Two Wednesdays ago, Josephine seemed to have a stomach bug with a slight fever, dairrhea, and a slight yellow color to her skin. The fever and dairrhea went away in a day or two, but her poop still wan't normal (sorry if that's too much info) and she was still yellow. I took her to the doctor on Tuesday and tested for jaundice, but her belliruben (sp?) was fine. On Thursday, I woke her up at noon and she had a high fever. I called the doctor and he did a blood test because the symptoms weren't adding up. She slept most of the afternoon. At 9:15 pm the doctor on call called us and told us to take her to the ER to have more blood work done. So Josephine and her two freaked out parents got to the ER at about 10pm.


Josephine's fever had gone down because of the Tylenol and was acting ok, besides being a little sleepy. The nurses and assistants had a hard time getting blood from her arm, though. Two different people tried and couldn't do it. Poor Josephine screamed and screamed and it took 3 of us to hold her still. They did manage to get an IV started. When the lab technician came in, he was finally able to draw blood with no problem. Josephine started freaking out everytime a new person came in the room after that. The rest of the night was a bit of a blur. The doctor was telling us all the different possible diagnoses could be, including E. Coli (sp?) and a number of different types of anemia (there are a lot!). She thought they would do a blood transfusion last night because Josephine's red cell count was half of what it should be (6.7 opposed to 11+). Luckily the hematologist wanted to wait until the next day to see what the count was then. They gave Josephine an IV of antibiotics to hopefully get rid of the fever then just a saline drip. The fever was a serious complication. Fevers increase your heartrate. An anemic's heart is already stressed and beating faster because of the lack of red blood cells. They were afraid Josephine could go into cardiac arrest. I don't know what her heartrate was. She has a heart murmur (although no one told us until Saturday) as a result of the low cell count. (It should go away as her counts get better.) I didn't ask too many questions. There were too many possibilities still out there and I didn't want to know all of the worst-case-scenarios of each one.


We were admitted around 3am. Each new person we met asked the exact same questions about Josephine. By this time, Josephine was so scared of anyone in scrubs and/or blue gloves and she was screaming too loud for the nurse to listen to her heart. She eventually had to sneak behind Josephine and listen while I held the stethescope to her chest. Josephine got a few hours sleep while Nathan and I got 45-90 minutes sleep. The next morning at 7 the lab tech came in to draw blood. Josephine screamed, as usual. But this tech was very good and they didn't need as much blood as the night before. We spent the day waiting. Waiting for test results, waiting for doctors. The pediatrian told us that they thought that her red blood cells were being destroyed. It could be a virus or bacterial infection or even her own spleen. Luckily she was wrong. They had to do tests on her urine and stool to make sure there was no blood in them (that would mean the red blood cells were there but being destroyed). The urine tests were showing a small amount of blood and it was a long wait for her to poop for the stool sample. It turns out the blood was from the trauma of the cathader they gave her in the ER. How do you get a urine sample from a toddler who isn't potty trained without using a cathader? You stick a bag around her privates and put on a diaper and hope for the best. The nurse's assistant (I don't remember her official title) was really bad at putting it on. Josephine would pee, but the bag wouldn't be in the right place. The the RN put it on, it worked fine. Frustrating when all your waiting on is the urinalysis. Josephine slept on and off that day when she could. She was really pitiful in the morning, but did better as the day went on. Papaw, Grannie, Aunt Moug, and Matt came by to see her, which she really enjoyed. (Granna came to the ER the night before.)


In the late afternoon the hematologist finally made his way to our room and after going over all the symptoms, etc. He told us that he thinks Josephine has transient erythoblatopenia (TEC). It's not that the red blood cells are being destroyed, it's that the bone marrow is not producing them. Or, at least, at some point the bone marrow was not producing them. Supposedly in the past few months Josephine was exposed to a virus (possibly parvovirus family) and it made her bone marrow stop producing red blood cells. Judging from some of the other things in her blood (I can't think of the name offhand), they could tell that new red blood cells were being made now, they just weren't mature yet. When they become mature, she will no longer be anemic. The body realizes at some point that it's not doing the right thing and fixes itself. It could be a couple weeks to a couple months for her levels to get back to normal. After the doctor left and Josephine had dinner, she was running the halls (with me pushing the IV hanger-thingy). I felt like I needed a sign saying "I swear my daughter is sick and in serious condition." because she looked perfectly fine.


Josephine's cousin Naomi had several of the same symptoms as Josephine, so Aunt Moug brought her to the ER to have her blood levels checked just in case. It turns out that Naomi was fine red cell-wise, but she had an ear infection. Her skin was still yellow, though. Probably from orange and yellow foods she eats. After they were finished in the ER, Naomi, Aunt Moug, Curtis, and Granna came up to visit Josephine. We ordered pizza and had a pizza party. Grannie and Papaw Moore came by then too. Once everyone left, we put Josephine to bed (it wasn't hard : ) and we went to bed ourselves. We were tired.


None of us, especially Josephine slept well, but at least it was a full night of restless sleep. The nurse took her off the IV around 6 am then they did more blood work around 7:30 am. It was only a finger prick this time. We talked to another pediatrician and a new hematologist and they though everything looked good enough for Josephine to go home. After the battle of getting a new urine sample to check for blood (there was only a trace) we got the discharge papers. Before we left John, Kristi, and Thaxton came by to visit. Josephine like showing Thaxton her sign language movie. Josephine was tired, but feeling ok when we left. As we were leaving I ran into Chris, Julie, Noah and Carrie who had come to see us. Unfortunately we weren't able to talk for very long, but we are glad they came by.


Overall we were happy with Children's Hospital. The nurses and doctors were very nice and helpful. Hopefully we'll neve see them again. : ) We meet with the hematologist again on Wednesday to have her blood levels checked. So that's the story about when Josephine had to go to the hospital for anemia.


If all goes to plan, there should be some videos after this of Josephine in the hospital.

2 comments:

Anonymous said...

Thanks for writing this all in detail. For those of us who weren't there, it was confusing as to how her stay in the hospital actually progressed.

Kevin and Jennie said...

We are glad she is feeling better! Quite the ordeal you went through.