Hopefully this new dose will show it is the right dose and finally have her in therapeutic range!
With Thanksgiving being last Thursday, Phoebe's immunologist said she didn't need to have her blood work drawn until today.
Hopefully this new dose will show it is the right dose and finally have her in therapeutic range!
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Phoebe's results from her blood draw came in today, and her levels of medication are still under the therapeutic range they need to be in. They did increase from 3.9 to 4.2, but not enough to not increase her level to the 8-10 range she needs to be in.
So, starting tonight her dose will be almost double what it was. A small positive is that with this week being Thanksgiving, we won't be rechecking her levels until next Monday. Phoebe is definitely happy about having a little extra time between blood draws. Despite having a bad cold, cough and no voice, Phoebe still managed to smile and was a trooper getting her weekly blood draw to check her medication levels tonight.
Her pediatrician said her cold is not in her lungs and should clear up on it's own in a few days. If it doesn't, we go back before Thanksgiving. Phoebe has had a bad cold with cough for the past few days and now she has no voice. Tonight we go for her weekly blood draw to check her medication levels, but first up is going to the pediatrician to make sure her cold hasn't settled in her lungs.
One year ago we met with a Geneticist to discuss doing genetic testing on Phoebe. Insurance has fought us every day over the past year, refusing to cover the test. After 365 days of sending reports, letters of necessity, test results and fighting tooth and nail to get the approval for this testing, we refuse to wait any longer. Phoebe needs this test.
Yesterday, we drew the blood to send for full genome testing and in about three months we will have the results. We will keep fighting while we wait for the results! Phoebe's results from her second blood draw still show that her level of medication is not in therapeutic range. While it did increase from 1.8 to 3.9, it is still a ways off from the 8-10 that they need it to be in.
So tonight we increase her dose again and recheck her level at her Friday weekly blood draw. Last weeks blood draw results showed that we needed to increase the dose of Phoebe's medication.
We are hoping that this weeks results show that we are getting closer to the therapeutic range she needs! Phoebe's blood results from Friday show that the levels of medication are under the therapeutic range she needs. They want the level to be between an 8 and 10, and her level is at 1.8.
So tonight we will increase her medication dose and recheck the level at her weekly Friday blood draw. We didn't expect a few days on a starter dose of this medication to be enough to turn things around for Phoebe, but it is still hard to see her swollen and in pain while we are trying to find the right dose of medication to see if it will help her. Phoebe will need frequent blood draws to check the level of medication in her system to make sure she doesn't have too much or too little.
She has only been on the medication for two days, but we are hoping we can find the right dose for her soon so she can finally get some relief from the swelling and pain. Phoebe's medication came in at the pharmacy early this morning, so tonight was her first dose.
With the side effects of the treatment that we need to watch for added to her feeling worse each day, Phoebe was more than willing to sleep in my room so I could keep an eye on her throughout the night. She curled right up next to me, holding my hand and cuddling my pillow. |
AuthorThe true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you. Archives
June 2021
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