On Thursday, May 15, 2014, 120 Days after Naomi’s transplant, she will be getting her Broviac line removed.
I could see her trying to process it today. She was definitely quieter and little apprehensive about it all while driving home from the appt. this morning. I asked her twice if she was ok. Her reply at one point was, “it will be ok to have to be poked for a blood draw because I can do gymnastics again.”
Dear girl. To have such an expanded vocabulary at age 6. Poked. Blood draw. Broviac line. Port. Transfusions. Platelets. Neutrophils. Leukocytes. Immune Suppressants. Antifungals. Bone Marrow. Chimerism Report…. Critical Illness.
She was also bit tentative about the discussion over dinner. Tonight, the topic of concern was the incision required to remove the line and the stitches to close the hole. On the other hand, she is very excited to have only two nights remaining to sleep with the line, and cannot wait to splash in a bathtub and completely immerse herself in the shower. I think I will buy her a basket of bubble bath and some bath toys to celebrate.
I think that part of me is still trying to wrap my brain around the fact that she had (has?) a critical illness and the only CURE available for her has sat across the table from her at dinner, carried her on his back, and read her books since the day she was born. I can vividly remember him reading her Black Beauty in 2007 when she was born and he was 6 years old. While Lauryn was down for naps, Micayah would sit on the floor and read out loud while Malakye played with toys and Naomi fell asleep. Just 6 years later….. he gave her a new start at life. It is CRAZY to think about! Life sure is wild.
As to the status of her diagnosis of Aplastic Anemia…. on her lab reports, it says “Pending Review.” It has been that way for quite a while now. I would have to go back in the charts to determine when exactly that became her status rather than “Active.” Maybe it doesn’t matter. I think it must since it is on the forms.
The meeting with the surgeon was very positive. He last saw Naomi in December when he put her Broviac in place. One of the first things he said was how good she looked. He was impressed with her short list of meds and the fact that she will not be on meds for life. He apologized for his ignorance on the matter of bone marrow transplants and how long the anti-rejection med was necessary when asking questions. That is main reason I wanted to go back to him for the removal surgery – he is a real, honest, trustworthy human being, easy to talk with, sits down with his patients and takes time to ask questions about – and admit – things he does not know. As he was leaving the office, he poked his head back around the corner and said, “it was good to see you again. Do you know how miraculous she is?”
Yes. Yes, I do. Thank God for miracles.