I told the on call doctor this weekend that Piper was drinking near to nothing and not wetting many diapers. I told her Piper was fussy and that I was concerned because she was so irritable for no apparent reason. And she pacified me and I doubted myself and sure enough Piper is very dehydrated and we are now inpatient at CHOA. Ahhh, junk.
Piper was scheduled today for an early morning LP (lumbar puncture with 3 chemos to her cns) and a push of vincristine. They went ahead with her sedation and while she was under attempted to get a sample to send out. They also attempted to catheterize her to get a urine sample. And neither were too successful. Her biopsy was tainted with blood (apparently not unusual or reason for concern) and her bladder was near empty. So now she is getting fluids around the clock to see if she feels any better, and they plan to do another biopsy on Wed or so. Both of the oncologist that she sees told me separately that they are NOT concerned with a relapse because her blood work still looks beautiful. There is a chance of relapse in her cns (central nervous system) but that would be very, very rare in infant leukemia, especially when she has never shown any leukemic cells in her cns. Not even at diagnosis. But it is still something to rule out.
The GI doctor came and visited with me and said that he is going to double her daily dose of Prevacid and will possibly do a scope when she is sedated for the biopsy. He didn't seem too overly concerned but I know that something is amiss and I am pushing for someone to figure it out. And the dietitian also gave us a visit and agreed that the Enfagrow could be part of Pipers milk/cup aversion. She encouraged me to look into replacing Pipers Enfamil Gentlease with Pediasure whenever Piper seems to be back on track. As if I want to rock the boat if the kiddo eats again...don't think so. She can go off to college with a sippy cup for all I care as long as she isnt 16 lbs any more.
So here we are waiting and walking. I am not kidding when I say the kid is a mess. She is whiny, pouty, clingy and sobby. Not at all like the Piper we all know and love. I am a nervous wreck. Possibly more than when we went to the doctor before she was even diagnosed, because now I know what we are up against and I know the worst case scenario and I am scared. Please pray for answers because until we have a reason for all of this I cant help my mind from racing down the scary path. And I am so not ready to go there...but I will tell you that "I told you so" and I wont be mistrusting my mothers instinct just because someone else has a fancy degree.