ICU: Waking Up! (March 9th, 2012)

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5:20 pm:

I have to be honest, coming off the tube and waking up has not been what I pictured. Her eyes are open yes, she is giving high fives from time to time, but she is a little distant, she is not talking and she is having withdrawals from all of the heavy pain meds and sedation she has been on the past 2 weeks. This includes erratic breathing and shaking as well as diarrhea and her eyes rolling back in her head from time to time.

It makes sense, she has been intubated for two weeks fighting for her life through sepsis. I think I expected her to smile at me and say “Hi Mom”..or something to that effect, so maybe my expectations were a bit unrealistic. She needs time to recover, I know.

They are slowly weaning her off the Fentanyl and trading it out for Methadone and Valium and please pray she does well with it in the meantime. Her breathing is still quite erratic and that is concerning to the doctors although she has held her own being off the ventilator since 10:30 this morning.

Her hands and feet look great, they are healing beautifully and we are so thankful for that! I will have Nathan post some pics later as she continues to wake up more.

I’m off to cuddle with the Phoebster now, something I haven’t been able to do for two weeks! We are thanking God for baby steps and knowing that we will continue to see improvement each day. She has PULLED THROUGH sepsis, and that is amazing!

Thank you all for your love and prayers!

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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