ICU: Withdrawal and Breathing Problems (March 10th, 2012)

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2:02 pm:

Nathan posted a video of Phoebe on our facebook pages if you would like to see it and haven’t yet. She is sleeping in the video, but you can see how much better she looks after the swelling has gone down and also having the tube out of her mouth.

Phoebe is starting to wake up as mom and dad look on.

She is still having a lot of withdrawal symptoms and was up most of the night. They explained today that her whole body is trying to bounce back from the sepsis which means that her liver, her kidneys etc. are not metabolizing at 100% and that ridding her body of the Fentanyl and other pain meds is not going as smoothly as it would otherwise. It will just take time.

Her muscle tone is also extremely lacking since she has been bed-ridden for so long so she is having trouble coughing the excretions from her lungs and her breathing is labored. They are suctioning her lungs frequently and respiratory therapy is working with her. She is unable to sit up or even hold her head up straight without it tilting to one side right now. The sepsis has been a big setback and she has a lot of physical therapy, speech therapy and occupational therapy ahead of her.

They are discussing doing another MRI on Monday or Tuesday to make sure that everything is still clear. They don’t seem overly pleased with her mental status and that makes me nervous. On the other hand, they tell me that the drug withdrawal is responsible for a lot of what we are seeing with her right now. She is just uncomfortable and feeling the effects of the weaning from the heavy meds. When she is more lucid she seems very “there” to me..gives high fives on command..has answered “yeah” and “no” in little whispers to various questions etc.

So, we just wait some more, for the drug-haze to clear, for the muscle tone to improve so she can cough up the stuff in her lungs, for her organs to get back to their normal function.

Her white cell count is very high right now and she has had fever the past couple of days which looks like infection, but given her situation, no one is sure why her counts are like this having been on antibiotics for so long. Today they are adding in some probiotics for her tummy and attempting to start back with the ng tube feeds. Please pray that goes well. She is just very weak over all right now and has an uphill climb just to get back to normal. We need grace for the waiting and protection from discouragement.

Baby steps..baby steps…

About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th. A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle". We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms. We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated. Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope. Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.

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