Blood Transfusion (Jan. 17th, 2012)

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5:02 am-Sodim 165/Blood Transfusion: It has not been a good night. They decided to go ahead and transfuse her since her heart rate did not stay at an acceptable rate after her stomach pain subsided. The transfusion went fine.

Phoebe’s sodium is 165 and for the first time it did not respond at all to her advvp shot, it actually jumped 10 points. They said the transfusion would not cause this. She has been delirious and hallucinating and had high fever throughout the night. The resident came in and seemed so unconcerned and flat about it all. Said we’d just give her some fluid and check her again in four hours. I said no, we need to check her sooner, that 4 hours was unacceptable since sodium is so high and she’s feverish and obviously hallucinating and not okay. He agreed to check it in an hour.

This is a different attitude towards her situation than we experienced in ICU and it concerns me a little. Please pray for her sodium and fever and hallucinating and the doctors. Thank you…

9:57pm: Amey’s laptop died in the middle of posting an update here. She asked me to do it for her. Here goes:

From Amey –

“I had a meeting with the endocrinologist today and feel much better about the plan for getting her sodium regulated.  It reached a high of 170 today but is now falling back and is at 156.  Her pituitary gland has completely quit producing the avp hormone so now they are tweaking her advvp shots and this is what was causing the glitch.

She got a lot of rest today since neither of us slept last night and she is better this evening.  I am so thankful  for the moving team that has united on our behalf and even though I haven’t seen the house we are moving into tomorrow I am looking forward to it. I am praying for a restful night for me, Mom and Phoebe.

I will post again when I have access to a computer.”

10:47 pm: My computer”s back in business, I had it plugged into a faulty outlet, oops! Well, I just wrote my second attempt at a detailed post of my thoughts about today and lost it in the cyber netherworld yet again, so I am calling it a night. Tomorrow is a big day and my one hour of sleep from last night is running out!

Phoebe is doing okay and I say just “okay” because we are still having fever and her sodium is still swinging. She did take a walk to the playroom tonight and did great with her balance. Her stamina is lacking understandably, but it was nice to see her at least take interest in the toys for a bit. I will post more about the play room and what I experienced there tomorrow.

Tomorrow is the day we move in to our rent house here in Dallas. I am so blessed by all the helpers we have coming to move furniture and get us settled in! I am so thankful not to have to do that alone in the midst of trying to take care of Phoebe and the boys. I look forward to seeing our house and having a place to call home finally!

Detailed updates and ponderings tomorrow. Thank you all for praying us through the last 24 hours, it was a bumpy one.

 

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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