Tuesday, January 26, 2016

68 days inpatient - Tuesday, January 26, 2016


Tuesday, January 26, 2016...68 days in the hospital

I hope the blinatumomab is kicking leukemia's butt as hard as it's kicking BJ's. Over the past few days, he has had fevers, feels achy all over, having joint pain, and just feels bad. He is on a liter of oxygen, and has had several blood and platelet transfusions. His fluid balance is being watched very closely. With the need for blood, platelets, IV antibiotics, additional potassium and calcium, and the fact that he drinks about 2 liters a day, he has required a daily dose of Lasix to remove some fluid. His lungs still sound clear, but a little diminished in the lower lobes. When his pain level is low and hemoglobin level is good, then his respiratory rate and heart rate look good too. His fever curve is looking better today. His last high temperature was during the night last night. He slept most of the day today. He tries to eat, but isn't eating much. His weight is down to 60.5kg...133 pounds. That's not much on a 6'2" frame. Physical therapy comes to work with him every day, and mostly just tries to help stretch his very tight hamstrings and ligaments in his calves, feet and ankles. It hurts him to stand up now, and since he has been on the blinatumomab, he has not been able to walk. It's exhausting for him to try to stand on the scale twice a day.

BJ will be moved back to the PICU at 0630 tomorrow morning. His increased dose of blinatumomab will be hung around 10am. The dose will triple, and he will be closely monitored for at least the first 36 hours of this new dose.

Please pray with us...
God, we come to you in Jesus' name, and ask that you continue to heal BJ's body. We thank you for bringing him to where he is now. Thank you for the opportunity to show the world the great faith of a 14 year old boy. We see the work you are doing in BJ and we thank you for it all. We are standing firm in your word, and trust you completely. You have never failed us, and you never will. Our faith is in you alone. In Jesus' name, continue to destroy and remove every leukemic cell in BJ's blood, in his body, and restore him to complete health. Bring his body back to the way you designed it to be. Restore his strength. Heal him completely. Protect every organ, protect his mind and personality from everything that goes into him. We already feel the joy from BJ's complete healing and restoration. In Jesus' name, remove any evil from around or within him, and cleanse every fluid, every medicine, every needle that is put into his body. Place your guardian angel over BJ, and place another at the door to his room. We ask that you be with each child and family inside this hospital; heal them. We thank you for all of our blessings...and we have so many. Thank you for each person that brings BJ's name to you, and we ask that you bless them, and let them feel your love and your presence. Thank you for sending your own son to stand in our place. We love you Jesus...and we ask all these things in your name. (We'll talk again in a little while.)

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