We made a trip down to Vorhees to see the specialists at CHOP for a second opinion on Phoebe. Because of how far away it was, we went down the evening before our appointment and stayed in a hotel room close to the hospital. Trying to make it as positive of an experience as possible for Phoebe, I took her out for a special mommy/daughter date to the Olive Garden for dinner and then to Target to pick a special toy for being so brave.
The next morning we woke up and went straight to CHOP. The specialists were very nice and understanding about me wanting a second opinion with what was going on with Phoebe. The poured over all of the copies I had made them of her blood tests, ultrasounds, EKG and hospitalization paperwork. With all the information I presented them, and looking at her clinically, they agreed with the diagnosis of autoimmune neutropenia.
They told me I had a choice of which hospital I wanted to manage her care but encourage me to stay with the Valerie Fund because they were only 10 minutes from my house. The two hour drive it would take me to get to Vorhees if she developed a temperature could be the difference of life and death (if it was a bacterial infection).
After returning from CHOP we followed up with the ENT, who said that surgery was going to be what was best to treat the sleep apnea. She scheduled the surgery for the beginning of April 2013.
She also referred us to a pediatric radiologist to have an ultrasound done of Phoebe's neck because the lymph node was still enlarged and appeared to be getting bigger. Depending on what they saw would determine what we would do next.
A few days after scheduling the surgery Phoebe woke up with a high fever of 102, was pale, dehydrated and lethargic. I rushed her to the hospital and with taking one look at her the decided to admit her immediately. (even before getting her blood counts back)
Again, they started an IV for fluids, antibiotics and admitted to third floor of Goryeb. The only comfort I found in it all was that I knew what to expect this time around and that we got the same room she was in the first time.
Phoebe only stayed in the hospital a day and a half this time, which was a relief on some level. On the other hand it was terrifying to know that a fever could spike high out of nowhere and drain her poor little body so quickly.
After discharge, we got the ultrasound the ENT wanted, and saw the lymph node was in fact still growing. It had even started to bother her. The ENT wanted to see if the tonsils were contributing to the issue, and said we should wait until after surgery to get another ultrasound, hoping that it would return to normal size with the tonsils out.
I just prayed she would be able to stay healthy enough until her surgery so we could resolve at least one of the issues she was experiencing.
Photos: Hospital Room March 2013