We are still tentatively looking at going home this weekend, but we must first meet the requirements ie: stable sodium levels and Phoebe handling her tooth removal without any “blips” tomorrow. Her sodiums today dipped into the lower range after having been stable for the past few days, so that needs to come back up.
Also, it was decided this evening that she will receive her spinal Methotrexate injection tomorrow while she is under sedation for her dental work. The scary: this is the drug that at least at one point was thought responsible for the outbreak on her hands and feet. The good: the Methotrexate will be the only chemo med given to her until Tuesday, so we will be able to isolate it as the culprit if there is a reaction. The good: upon further study it is unlikely that the very low dose of MTX that Phoebe got was responsible for her specific reaction. It is thought to be more likely related to her septic shock. The scary: here we go again, and we weren’t anticipating it until next week.
She continues to become more “Phoebelicious” as they wean down the Methadone and Valium dosing. She growls in her playful manner, has more spontaneous talking, speaks in complete sentences and is more clear in the eyes. If I cough, she says “You okay Mom?” or “Bless you!”, sweet girl. She is so observant. Another not-so-great effect of the weaning, is that she is now beginning to feel all of her aches and pains from being in bed for so long. She can not lie down on her back because her lung capacity becomes too diminished and she can’t breathe, so I have to change her diapers with lightning speed to get her sitting up again. She also holds her lower back and complains that her legs are hurting, so I have spent the last couple of days trying to massage her when she would allow me.
I don’t have a lot of wind in my sails tonight since I spent the last 2 nights at the hospital, but I want to ask for prayers for Phoebe tomorrow as she has her tooth removed and receives her Methotrexate injection, that she would do well with anesthesia, that both procedures would go exactly as planned and that none of this hinders our home-going. I have three little boys who are VERY excited about the opportunity to show off their little sister to the neighbors and spend some time here at home with her!