Sunday, June 28, 2009

2 for 2

My enthusiasm to be optimistic is quickly dwindling away. I cannot post anything positive now without a huge setback. I'm 2 for 2 now in saying that she's doing so well right before an emergency trip to the hospital.

Amanda started running fevers off and on again Friday. Once again, the lumbar puncture became my suspicion. She was having lots of headaches, was very ornery, and sleeping more than usual. Her fever started spiking last night - 10:00 on a Saturday night of course. This meant a trip down to the emergency room. Talk about the belly of the beast for a cancer kid! It's was nearly enough to induce a parental panic attack given the amount of germs surrounding her. I'm so grateful for Clorox Wipes!!! Keeping things sanitary and her sane was a two man job for Scott and myself. Overall, she did pretty well given the late hour. She was not miserable like last week. But, her fever spiked pretty high once we got there. She got her preventive round of antibiotics and we waited for labs. She was actually relieved that she doesn't need to have her port accessed on Scott's birthday this next week. It's interesting what stresses her out. Anyway, her labs looked good enough to not require a hospital stay, and she has no other noticeable symptoms. We made it home before 3am, and her fever was already starting to go down by then. We'll watch her closely. Again, she'll be hospitalized if her condition worsens. Hopefully she'll sleep most the day and continue to get better.

It is likely not the flu, as she was on Tamiflu throughout the week. But the doctors think it is some kind of viral bug again. I'm about to pull my hair out. We have been soooo careful with her and ourselves. Nobody in the house is noticeably sick, and she doesn't go anywhere anymore. In fact, I've had several meltdowns from her this week complaining about how isolated her life is. She hasn't played with a friend in over three months. We're trying so hard to protect her. I don't know what we are doing wrong.


  1. She's immunocompromised so the most innoculous bug is a threat. Make sure she washes her hands well before eating. You don't know who has handled groceries before you buy them. Although the Avagard hand cleaner is good, hand washing is better. Make sure everyone who comes into your home washes their hands well. The chance of getting sick from a "dropplet" or airborne bug are a lot less than direct contact. Have Amanda and Erin wash their hands several times a day. The second you or Scott walk into the house you need to wash your hands before you touch anything.

  2. Mary Ann,
    I was hoping to pull up the blog today and read that Amanda was feeling better from last week. I'm so sorry she is still fevering and had to go back to the emergency room (especially on a Saturday night). Besides putting her in a bubble I think you're doing everything you can. Call if you need anything. Love you!

  3. You're not doing anything wrong. If anything you are doing everything right. I still hesitate to take Kristen out in crowds and she has been off treatment for almost 3 months. I think you are being smart to keep friends away even though it can be hard. Both times that Kristen had ALL, the first few months were the hardest. We spent several weeks in the hospital for fever and other things. It seems like once we finally hit the 5 or 6 month mark things seemed to go better. It is so hard to understand why our little angels have to suffer and be so very sick, but I know as mothers we are inspired and when it comes right down to it, we know what is best for our children. Keep listening to your heart. I was wondering what color is Amanda's favorite or what does she she in to Hannah Montana?