Wednesday, March 14, 2012

Update 3/14/12

Long story short.

Pipers lungs are very sick. After being on the heavy duty nasal cannula for less than 24 hours, most of those being a very sleepless and fitful night of fighting to breath, the decision was made to intubate her. While this was a horrible thing to hear when waking up first thing this morning, it paled in comparison to seeing Pipers oxygen drop when she pulled the nasal cannula out and she struggled to breathe while turning purple. Nothing can compare and yet, 30 minutes later when Pipers nasal cannula was removed and the tube placed down her throat my very being sobbed as she struggled to breathe. It took a team of 2 doctors, 2 nurses, a nurse practitioner and 2 respiratory therapist to work together for 20 minutes to bring her back to normal...albeit with total dependence on the ventilator. They put a catheter in to allow them to accurately watch her fluid intake and outtake as her blood pressure fluctuates often. There was also an arterial line placed in her wrist to get better readings for the blood gases and a continual blood pressure. TPN continues, an NG tube was placed to for medications, she is receiving fentanyl and versed to ease the pain and keep her sedated and vec as a paralytic.

Since Piper was placed on the ventilator this morning she has been weaned from 100% oxygen to 55% and her pressures have stabilized as well. Small steps but at least they are going in the right direction. Her BMT doctors seem to feel that there is an infection somewhere on her lungs but she is not yet strong enough to pause the vent and send a syringe down for a sample. Instead they are putting her on a fungal medication and a viral medication in addition to the many other types used proactively already. The hope is to have her more stabilized by tomorrow and they can attempt a culture and have some definitive results for a precise medication to treat it. Her IL2 shot was put off today and they said they will take each day and see if and when she is able to continue.

While leukemia is a very real fear, at this point this situation is more frightening. The doctors were very clear that this is a life threatening issue but feel that if we can get a hold on what we are dealing with, they are optimistic that she will pull through. I pray so.

I still cannot believe that we are here. I already miss her little smiles and the none stop request to have her back scratched. Seeing her lying so still and helpless moves me to tears and yet, I have loved holding her sweet hand and seeing her heart rate lift at the sound of my whispers. That she declined so quickly and so seriously shows us the gravity of the situation and fully stressed the fact that her body is weak and is struggling to survive.

Please pray for Piper, I cannot stress how serious this is.

32 comments:

  1. Prayers for little Piper and her family.

    ReplyDelete
  2. come on piper you can do it and fight this awful thing. we are praying for you and your wonderful family

    ReplyDelete
  3. Praying continually. Fight, Piper! We love you guys.

    ReplyDelete
  4. Tylers mom Stephanie sent me.Im praying for Piper n will continue to do so, God Bless.

    ReplyDelete
  5. We are praying for your sweet girl and your family.

    ReplyDelete
  6. This is such sad news. She can fight it afterall she's already a great fighter!

    ReplyDelete
  7. I do not know you but my daughter Lauren Vardaman has spoken of you and Piper since meeting you in the hospital where our grandbaby Addyson was also receiving treatment for Neuroblastoma. Lauren sent out a text after midnight this morning with a plea for prayers and a link to this website for Piper. We are in Florida and my husband is Pastor at Ormond Beach Union church, a bible believing and bible preaching church. We will be praying for little Piper and will put her on our prayer list here...I believe in Gods grace and mercy and His abundant love for each of us. I believe in the power of prayer and miracles...our baby Addyson is an example of this...Gods healing of her cancer was a gift that we can never repay. My gratitude to my Father is to pray for your Piper and ask for His healing for her. Since receiving the message last night, she has been a continual thought and so I am praying as often as I think of her and especially for you...as a mother of 6 children (and one grandbaby), ages 4 to 20, I cannot fully understand what you are dealing with other than knowing the common bond we share in the unconditional love we have for our children. My heart aches for you as I cried while reading this latest update to my family about Piper. I feel your pain and I pray for Gods continual hand upon you for strength and wisdom and peace...that peace which passeth ALL understanding. God bless your very soul and Gods miracle healing upon Piper.

    Marnie Carruthers
    Ormond Beach, Fl

    ReplyDelete
  8. Prayers have been lifted. Praying for a miracle for this precious little girl!

    ReplyDelete
  9. I pray little Piper will heal, get over this infection and return to her happy self. I pray she feels all of our prayers and love for her and for her fabulous family. God bless you all!!! Continuing prayers are sent your way.

    ReplyDelete
  10. Our family is praying for you. We wept reading this and cannot fathom the pain and exhaustion you are feeling. We want you to know strangers are lifting you and Piper up to an almighty God. We are trusting and hopeful. Christine Mills

    ReplyDelete
  11. I was asked by a friend to pray for Piper and your family. I just read this post and my heart hurts for all of you. I will pray for Piper and you all right now.

    ReplyDelete
  12. I am praying also! I have also asked others to pray.<3

    ReplyDelete
  13. I am praying, Susanna. My heart is aching with yours as I cry out to the Father for healing.

    love,
    elizabeth

    ReplyDelete
  14. Lifting up sweet Piper in prayer. Keep fighting baby girl. Praying for God's miracle healing on your preciuos little body. In God's Love, Dionne

    ReplyDelete
  15. Oh, how my heart aches for you, for Chad, for Linley, and for sweet Piper. I think I posted these lyrics once before but after reading this post I wanted to post them again...

    When you walk through the water
    I will be with you
    When you pass through the river
    Those waves they will not overtake you
    When you walk on the fire
    Those flames they will not touch you
    You are mine
    You are mine

    Praying without ceasing that God would continue to hold all four of you in the palm of his hand.
    Much love from Rome!

    ReplyDelete
  16. Praying for Sweet Piper to have the strength to continue fighting and for you and your family to continue to see little improvements today.

    Jackie

    ReplyDelete
  17. We are praying for Piper......that God will give her the strength to fight this battle!

    ReplyDelete
  18. Praying for God's healing hands to be placed on this precious little girl. Our family, our church & our community are praying for you all.

    ReplyDelete
  19. I am fervently praying for Piper and your family.

    ReplyDelete
  20. I am praying for y'all. May God bless you with His perfect peace. May He bless your baby with healing as only He can.

    ReplyDelete
  21. I am so sorry about all this news I just caught up on. I am soooo sorry you are having to see piper like that and that Aidyns dear friend is having to go through this. My heart just broke. It was just a few months ago they were racing with their walkers. He only wants to try walking with Piper. I am praying for Gods grace and mercy for you all. I'm sorry I haven't got on here sooner, Aidyn is in and out of the hospital too and I just asked Matt to help me get on here so I could let you know I am always praying for your family and precious Piper. Please give her a kiss from Aidyn. Please call me if you would like to talk. We love you all sooo much.

    Dora

    ReplyDelete
    Replies
    1. This comment has been removed by the author.

      Delete
  22. Hey this is aidyns sister amber. I just read this and it broke my heart. Just remember GOD is her doctor. She is an amazing little girl. That is aidyns racing buddy and you know as well as I do that they are stronger then a lot of people could ever imagine. We are praying for Piper as well as y'all. Much love, amber

    ReplyDelete
  23. Aadita prayed "Dear God, please make Piper better FAST so I can play with her. Also, her dad "CHAT" and mom "Zuzanna". And make Piper better really really fast." Sus, this whole ICU thing is always so scary. I remember the docs saying that int he ICU its one step forward and 10 backward but slowly and gradually you get out of there. Praying that they get that infection under control and she is back on track with her trial. Love you and I wish I was closer to come give you a hug and wipe your tears. Mu.

    ReplyDelete
  24. Yes sweet Susanna we are praying

    ReplyDelete
  25. Thru the eyes of a child: No matter what Piper knows your there, she feels your love and compassion, she knows that Mom, Dad and sissy are in her corner. I only know you through Paula Lembo and have tried to keep up with the events of your beautiful girls through her. She has pictures posted in her office and is always ready to sing your praises for being the strongest mommy in the world. I know none of that matters to you but to those of us who are praying and lifting your family up in your times of need it is a wonderful witness for GOD's amazing grace and love for those who need him the most and love so unselfishly like your family does. Wish I could relieve you for a few hours to rest and love on Chad and Linley, but this is your journey and GOD will get you thru. Please know that there are people from coast to coast that are praying and lifting you up, you are not alone we all love you and care about the future of being bright and full of sunshine shining on Pipers beautiful little face.

    ReplyDelete