Dehydration / Thirst Mechanism


Phoebe’s sodium rose to an all time high of 171 last night. She is supposed to be at a level of 140. She was severely dehydrated due to the fluid changes that were made in her diet before we left the hospital. She was only receeiving nutrition through her ng tube for 12 hours a night in th ehopes that her appetite and thirst mechanism would kick in and she would nourish herself during the day.

She does great with the eating part, but seems to have completely lost her thirst mechanism in the brain surgery. She will take a sip or two of a drink but refuses to drink more so we often give her a fluid push of water or juice through her ng tube. Apparently yesterday, after several days of being on the new feeding plan, she just got completely dehydrated to a dangerous degree. All day long she was asking for food and never seemed to be satisfied. I think her signals were confused. She knew her body needed something but couldn’t figure out what. She batted away the sippy cup every time it was offered.

I have no idea what this means for the future…that her thirst mechanism is seemingly gone, but I know that I feel total relief that her confusion and changed mental status was not a precursor for sepsis like last time. That was the biggest sinking feeling I’ve ever had…

She will now be moved to the Oncology floor and kept in-patient while they re-regulate her sodium levels and make a new fluid intake plan. The worst part about this, is that she will miss two of her home health therapy consults appointments tomorrow for her physical and speech theapies. We have been trying to set this up for two months and can’t seem to make it happen because she is in and out of the hospital so unexpectedly. She needs t o be working every day towards walking and these delays set her back.

Thank you all for praying…it was a scary night and we’re all glad to be on the other side of it.



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.

7 responses »

  1. Thank you for the update Amey! We went straight to the big guy upstairs when we learned of the challenges…..We are thankful for His answer to everyone’s prayers.

    Love from Washington

  2. I’m so glad to see this update. When I read the ICU title I got a pit in my stomach. I’m grateful that it seems to be a fluid issue. Still praying for you and asking God for the rejuvenation of what seems to be broken. He knit her together once so I’m believing He can reknit those glands again. Love and peace.

  3. So glad to hear that she’s not sepsis. As frustrating as it is, she’s here to undergo her therapy, so if pushed 2 months back, although not ideal, we’re all revelling in the fact that “She gets to have therapy…GLORY!”. Thank you Jesus for every day of Phoebelicius & for renewed strength, patience, & a new life ordained by You, the Author & Perfector of our faith. Grant our sweet friends what You know their hearts, minds, & souls need to continue fighting the good fight, renewing daily their minds through Your divine words of instruction, admonition, & encouragement.

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