I immediately called the oncologist's office to see what the protocol was since her neutropenia had been resolving over the past few months. They told me they did not need to see her but that we should go to the pediatrician for an evaluation.
We got in to see the pediatrician quickly and she seemed to be getting worse. The right side of her face and the right side of her neck were swelling like they had done during her first hospitalization, and she was complaining that her neck was really hurting her. She was not vomiting, did not have diarrhea, and had no other symptoms of any illness. Upon exam they noticed her throat was red so the did a strep test, but that came back negative. The only thing we could do was to consult with the oncology office to see how they wanted to proceed.
While we waited, Phoebe curled up on the examining table, placed her head in my lap and fell asleep. She still had not had anything to drink and she had not urinated at all. It was now 10:30 am. The doctors agreed that the best course of action was to send her to the emergency room for a blood test and fluids.
When we got to the hospital, Phoebe was completely limp, struggling to keep her eyes open and too weak to move. I wrapped her in her blanket and carried her in my arms. She didn't even have the strength to hold on to me. When I walked into the ER doors the staff rushed to get me a wheelchair for her to sit in. As I placed her in it, she looked up with me with such pain and sadness in her eyes. It broke my heart.
With how she looked they opted to triage her in a room in the pediatric ER. Her temperature was up over 102 now and she was turning red. They were expecting us because the pediatrician had called, so they already had their first plan in place.
The nurse had a hard time starting her IV because of how dehydrated she was. This is also one of the only times I can remember an IV or blood draw hurting Phoebe so much. Once it was in place they started her on her first bag of fluids and gave her some tylenol. Phoebe fell asleep curled up next to me.
It took a few hours but her fever eventually broke. They say the highest it was was over 103.
We spent a total of 9 hours in the emergency room and she slept almost the entire time. During that time it took 3 big bags of fluids before Phoebe was hydrated enough and started to urinate.
Her blood tests came back showing an increase in her white cell count. Her neutrophils alone were over 15000. Something was going on and their best guess was virus.
Since she had started to perk up, urinate, her fever had broken and her neutrophil count was so high they decided to discharge us. In all honesty I was really angry. Sure, I wanted my baby home with me, but with all the information and test results I had given them about everything she has been going through the past few months, I felt as if they had dismissed all of that and focused solely on last years issue of neutropenia.
Her neck and face were still really swollen, so they prescribed an antibiotic and told us to follow up with the pediatrician the next day. And if they thought it was viral, why would they give her an antibiotic? Antibiotics do not help for viruses.
Knowing there was nothing more they could do, or would do, I signed the discharge papers to take my little girl home.
She slept with me that night while my husband slept on the couch.
Photos: 1-in the pediatricians office
2-on the way to the ER
3, 4, 5 & 6-in the ER
7-at home after discharge