Sleep Trouble (Jan. 8, 2012)


12:17 am: She still hasn’t had a real sleep since she came out of anesthesia yesterday. It’s half past midnight and she is restless and a bit delirious. Going to ask about the pituitary gland/adrenaline link tomorrow and see what we might be dealing with. The good news is that her sodium levels are maintaining well even with all the food she ate tonight. The roller coaster wears me out…up and down, up and down. Needing to see her sleep…and needing to sleep too 🙂

8:40am-Prayer Points: There was not much sleep to be had last night. Phoebe’s sodium levels made a huge dip from the healthy 145 down to 130 which is just 3 points higher than when she seized at 133. They took her off of food and liquids again and are closely regulating her fluids. The problem has been sodium too high, now we are shifting in to sodium too low. They said this can go on for a week or depends on the child, but this is how it goes after neurosurgery. She did not sleep last night and called her Grammy “Daddy” all night. The sleeplessness is not alarming to the staff here, but it really worries me. It only seems right that one would need to really sleep after such traumatic surgery. They confirmed that the pituitary gland is just trying to regulate things and these swings are normal. It’s so difficult for me not to go up and down with the swings emotionally and maintain an even keel, but yo-yo’ing won’t do either of us any good, and my nerves are already frazzled.

The left side of her body is a little more stiff than the rest and although they said it was mild and would loosen up with brain healing, I shared my concern with the doctor about her pointing left foot and her resistance to bending that knee. So she is sending a physical therapist by today to see her and show us some exercises to do with her until she can get up and walk. They mentioned that she would most likely have to have some Physical Therapy to help the brain and body get back in synch in some of these areas again. Her ankle still bends back and her knee still bends, it’s just stiff and resistant.So, today feels like a 2 steps forward, 1 step back kind of day. Her fever is also hovering around 100.5 and we need that to go down. Thanks for standing with us.

1:54 pm-Critical Hour: Please lift up our girl right now. Her sodium level is at 125 and her lucidity is slipping away as her levels dip so low. Her sodium needs to slowly climb back to it’s proper level at 145. She has until 2:30 to go up a point and show that her level is improving. If it is not improving they will try a new drug that is suppose to help her body dump fluids and better concentrate her sodium level in her body. Sodium this low is seizure territory and we do not want to go there again. Things are touch and go right now and we are reaching out to all of you to hold her up right now. Praying I have a good report to share soon.

2:50pm-Holy, Holy, Holy: Playing Hillsong, “Holy, Holy. Holy in Phoebe’s room, holding her hands and looking into her eyes praying for sodium. Sweet girl, shows herself every few minutes, feels like we are calling her back to us, standing in the gap….

4:12pm-Update: Her sodium level went back down to 125 but the dr. has decided to hold off on the medicine and wait to see if Phoebe will regulate herself. If she goes below 125 we will look at giving her the medicine to drop the fluids from her body and try to bring her sodium up. Thank you all for your prayers and guestbook encouragement. She just got some Tylenol and smiled for us.

7:13pm-Calling For Prayer NOW! Phoebe is having a seizure…Pray

8:45pm-Seizure #2: I had just finished showering at the Ronald McDonald house when Mom called to tell me to come right away. So thankful to be literally 3 minutes away from the hospital. She had a shorter seizure than last time and she has maintained breathing on her own so far. We are waiting for her to wake up, but it might be a while given the medicine she was administered and the after-shock of the seizure. Thank you all for praying. I don’t think my nerves have ever been so shot in all of my life…the intensity of each moment today was overwhelming, and yet there is an underlying peace that I recognize as God’sgrace and the feeling of being upllifted by all your prayers. Praying for an uneventful night..


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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