Monday, July 19, 2010

I have a case of the "I told you so's"

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.


  1. You go girl! Trust those instincts...that is always what is right--can't learn it from a book and most don't understand but mothers just know.

    We miss you guys and hope we get to see you when we are there Wednesday & Thursday. But if not, way to go Piper!

    We are praying that Piper's energy and spunk quickly returns.

    We love you and think of you and pray for you daily.

    With Love @ God Speed,
    Scott, Britney, and Bo Story

  2. praying in winterville, dearest friend.

  3. You did right, it is frustrating when doctors don't listen to moms and nurses when we KNOW something is wrong. Always do what you did and fight for her no matter if it turns out not to be something at least it was checked out. My prayers are with you that she recovers from whatever is ailing her now and to give you strength and her healing. Wendy

  4. My prayers are with you and your family.. I know exactly how you are feeling being a leukemia patient myself... I am 45 years old and have had leukemia since I was 9 months old.. I will be more than happy to talk to you about anything if you would like I have no problems with that... Just keep on praying and think POSITIVE and things will be alright.. Angel

  5. Will continue to pray. Don't give up until you get some answers! I absolutely believe that "mother's intuition" is a real thing, and a gift from God.

  6. Praying for you, my heart aches for you and the stress and fear that you are constantly facing! What a precious little girl to be going through so much! Love you! If there is anything that I can do, please let me know! Even though I don't let you know very often, I do pray and check your blog frequently.

  7. Susanna, we are praying for you all, for answers and for the strength and grace for today. You are an amazing mother!

  8. Praying for you and yes, MOTHERS KNOW BEST!!!! It doesn't take a degree to know when your child is unhappy!!!! I am so proud of you girl. If you need a break you call me!!!!