This last week has been a week from dare I say, HELL. Hannah woke up with petechiae on her neck. This is something we have dealt with before, but it was worrying me a little. I sent a picture to Debbie (her awesome doctor) and she ordered blood work. Later in the day it spread to the other side of her neck, then behind her ears.
During the night, I had a HORRIBLE dream. Costco didn't have enough of her steroids so we had to go back & get more, something was wrong with the 2nd bottle and she died. I couldn't sleep much the rest of the night, so I kept watching her. Well the petechiae had spread up through her hair, down her back & front. I was freaking out!!! I emailed Debbie in the morning that it was spreading & she said she wanted us to see the Dermatologist up at Primary's. We couldn't be seen today so she had us go to our Pediatrician. They thought that because she had a fever, cough & runny nose that it was something viral, but the platelet count would tell us more.
We (my mom, Makena, Hannah & I) went to TImpanogos Hospital for blood work. That was an ordeal. Hannah hadn't had this done for quite a while and was so worked up. It is so hard for me when my kids are hurting. We made it through and went home. I emailed Debbie that we were done and almost immediately she called with TERRIBLE news. She said, "Becky, her platelets are so low. Don't let her rough house or hit her head. You need to made arrangements for your other kids because she needs to get to the emergency room. I am having the Hematologist look at her blood and I will call you right back!" I went ballistic. WHAT WAS HAPPENING TO MY BABY????? Debbie called back shortly and said she didn't need to come in today, but this week for sure. So we had an appointment for Thursday morning with an ONCOLOGIST. Don't let her hit her head, was our instructions. The next few days were hard to say the least. Not knowing what is going on is a scary feeling.
We went to Primary Children's Hospital Thursday morning. We got the the Oncology department and let me tell you, I could not even walk in the door. I was terrified. Tears started welling up in my eyes and I knew I couldn't do it. Dan & I bot got composed and walked in. Every where you looked there were pamphlets on cancer & leukemia. I seriously had to just look at the ceiling or I would cry. They called us back, talked to us a bit then sent us to do more blood work. Hannah was thrilled. They took quite a bit of blood and she was not feeling well at all. She hasn't had that reaction before, it was quite disturbing. She finally started feeling better and we went down to have lunch. THe next hour was nerve racking.....to say the least. We went back up to Oncology and waited for the results. The doctor came in and said, "It's not cancer, it's not anything to do with her thyroid, she looks good." It is "Immune Thrombocytopenia Pepura" or "ITP" It was like a weight was lifted from our shoulders. Basically it happens a few weeks after a virus and causes the petechiae and low platelets. On a normal kid you wouldn't have any problems, but because of Hannah's Nephrotic Syndrome it gets a bit worse. THey changed her steroid dose and we will do weekly blood tests until the platelet count goes back up. In the mean time, don't let her bump her head!!!!!
What a relief!!!!! We have never been so scared in our lives. We know that we are so blessed and Hannah is an amazing and tough little girl who can make it through anything!!!!!! Thank you so much for all your prayers and concern. We will keep you posted on her platelet count. Her first check is this Thursday!!!!!!
