When we were admitted on Friday the Drs kept telling me that they had written a 'script for a morphine drip and also for IV nutrients whenever I was ready. I fought it telling them that I wanted 24 hrs with Piper on Lortab only, that I was certain she would feel well to eat enough to keep nourished and hydrated. I am going to continue to trust my own maternal instinct because last night at 4am, Pipers CVL broke. Her CVL (central venous line) is the tube that goes from the main vein near her heart out her chest and connects to the IV pole when we are inpatient or simply gets taped to her clothing when we are at home. Its the only way she receives fluids, chemo and most of her medications as well as transfusions for blood and platelets. Like I said it popped this morning but we had an amazing nurse who was on it and called the repair team who had it fixed in about 30minutes. Because of it being repaired, we had to unhook her from the IV and not use the line for 24 hrs...if Piper had been on morphine or iv nutrients we would have had to put a temporary line in her hand or feet. Thankfully she was able to be without fluids or the pole for the whole day because she continues to eat better and better and is happy as a clam. She has not had any Lortab or Zofran since 10am and I am hoping she feels well enough to stay off of it all.
Since it was a weekend then MLK day, Pipers usual doctors were not here. They should be back tomorrow with a plan of action. She is still due another 24 hr dose of Methotrexate but Dr Lew showed some apprehension about giving it to her because of her reaction to it, this time and the last time as well. There is talk of canceling it, talk of putting it off another week, talk of giving her a lower dose and talk of going ahead as normal on Friday. I pray that the Drs. use wisdom they don't understand and that God leads their minds. I am frightened that if we do not go ahead as the protocol plans that I will always wonder if that was the "cure" dose if Piper were to relapse. Its all so scary.
As of right now we are doing wonderfully. Piper is one of those rare kiddos who doesn't nap on Lortab so she catnaps while eating a bottle and then stays up until 11 or 12...and sleeps until 9 or 10. Yet another vision of parenting a teenager. Shes going to be in for a shock the next time we are home and out the door at 830am for Linleys preschool! Speaking of Linley I am missing her little self. I have not seen her since Friday and I am hearing many funny stories from my parents. Linley is a fountain of funny sayings and I constantly rejoice that God made her my very own. Of course she also keeps me on my toes but my dad says she is just payback for my own headstrong and opinionated self as a child. Thanks Dad.