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The Bug’s Story, Part III

May 18, 2010
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You can find the first two parts of this story here and here.

… I asked, “What happens if you don’t have enough red blood cells to move the oxygen?” The doctor looked at me, then at J. and back at me. She said “Heart Failure.” My knees buckled…

The doctor then explained that all of The Bug’s blood work showed that the transfusion worked, her hemoglobin was back to normal. She and the other hematologist/oncologist we saw that week told us that this was probably a reaction to an infection – although they couldn’t find any evidence of any illness or infection in her blood tests – and that it would “burn itself out.” The state of the body killing off too many red blood cells is hemolytic anemia. This in itself is not a diagnosis, but they told us that the infection that caused the HA was. They just wanted to keep her in the hospital until her counts were normal for 24 hours.

They sent us home 9 days later, after abandoning the 24 hour rule. It would take weeks to get to that “normal for 24 hours” point.

Over those 9 days in the hospital, The Bug received 8 or 9 red blood cell transfusions. I moved into the hospital, doing my laundry down the hall in the lounge, keeping leftovers from the dinners that friends and family brought in every night, and finally getting The Bug to eat a bit. J. was there too, but at some point I think I made him go to work.

I asked every doctor I saw if I should stop nursing. I thought there might be something in my milk that was making her sick. We asked if she could have been bitten by a fly (we had had a strange outbreak of flies in our house that week). I asked if the dog licking her could have given her some germ (we had a dog that had, indeed, licked her face earlier in that week). We asked if one of the vaccinations she had received could have caused this kind of reaction. The answer to each question was “No.” Breast milk has antibodies that only help, don’t hurt the baby. There was no evidence of a bug bite, nor did the doctors think any kind of household fly or dog spit could cause such a reaction. And, according to the doctors, vaccinations don’t cause drops in red blood cell counts.

After 9 days in the hospital, the doctors told us that they were afraid that keeping her there would invite more germs and another infection, and that since they knew we lived close by and believed that we would follow up, they were going to send us home. We would return each day for the next few weeks for a blood test. On days when her hemoglobin hovered in the “close to normal” range, they would send us home. On days when it was low, we would stay for the day and she would get another transfusion. I felt like I lived in that hospital; I would get there every morning at 9:30 and go to the lab where they would prick The Bug’s heel for a blood draw. Then we would go upstairs to the Hematology/Oncology office and wait for the results. If we stayed, The Bug would lie in her carrier/stroller and sleep once the transfusion started, and I would lie in the hospital bed and work, watch TV, occasionally I napped, and once I remember just sobbing. I was exhausted, I was terrified, and I was confused. I couldn’t figure out what was wrong with The Bug, what else I should be doing about it, or how to handle the situation we were in.

At some point my aunt and uncle came to visit us. I’ll call them… Pank and Ponk. They hadn’t really visited us except for family parties or big events before, but I couldn’t have been happier to have them there. They went to the grocery store on the way into town, and my aunt made dinner every night they were there. She never asked what we wanted, she just cooked. I dread deciding what’s for dinner almost as much as I dread cooking it every night.

One day while they were there, they both went with us to the hospital. We sat in the office waiting for the results, chatting with the receptionist. After the standard 20 minutes or so, she received the print out of the blood counts. For the first time, The Bug’s hemoglobin count had gone UP without a transfusion. She was still just within the normal range, but we were ecstatic. I will never forget all of us, me, Pank, Ponk and the receptionist… leaping out of our chairs and cheering. It certainly wasn’t the end, but that small victory was a very big deal at that point.

4 Comments leave one →
  1. Ponk permalink
    May 18, 2010 3:58 pm

    I’ll never forget it, either. Love you guys!

  2. jec permalink
    May 19, 2010 6:30 pm

    Thanks so much Pank and Ponk. It was so awful not to be there–esp. as I wondered whether my cough had given her an infection.

  3. May 21, 2010 5:26 pm

    You should have a tissue warning at the top of these posts! I’m in tears. There is nothing scarier in this world than a sick baby – especially when it’s your sick baby. So, tears!

  4. May 22, 2010 1:47 am

    Sorry, Robyn. I think there is one at the beginning of Part I. You should see me trying to proofread it! Puddles.

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