Thursday 11 April 2013

Coasting to Climbing

Is it not possible to have a small problem with Hope?  Everything is a major issue and never a minor bump when it comes to that little girl.  This morning I did not like the way Hope looked as soon as I saw her.  Her eyes were dark, she would not wake up to interact with me and she was not herself.  I felt like she was hot and kept asking the nurse to re-take her temperature.  Yesterday I had decided that I would still have lunch with two friends as I thought it would be good for me to stay mentally stable and take a break from the PICU.

At 11am the technician came to ultrasound Hope and she was given a sedative, it was the perfect time for me to sneak out while another friend cuddled her.  I was going to be back in 2 hours and would have Shawn with me as the doctors informed us this morning that we needed to have a meeting about Hope's next steps.  On my way out I spoke to the doctors about my concerns and how Hope's heart rate was too high and her eyes were clearly telling me she was sick.

Shawn and I walked in to a bad scene at 1pm.  The number of people standing outside Hope's room was intense.  The very sight of such a crowd outside your child's room is never good.  The doctors spoke to us outside and we never got in to see Hope.  The sedative had pushed Hope over the edge and her heart rate was over 180 bpm and her colour was worse and she was almost unresponsive.  Hope's blood pressure was dropping and they feared they were losing her.  She was given some fluid to try to perk her up and started on a few new meds.  Shawn and I were taken down the hall to meet with the doctors and were asked if we wanted extreme measures taken to save Hope's life.  We still felt that Hope was in God's hands and we wanted them to do everything they could, God would take her if that was his plan anyway.

When we got back into Hope's room, she looked terrible.  She was working really hard to breath and they had decided it might be best to intubate her and give her a rest.  I touched her body and felt again that she was quite hot.  Finally, she spiked a true fever and gave the staff a reason to start her on antibiotics.  These were started as the room was set up for life support.  They had decided that intubating Hope in her condition may push her over the edge and they needed to be ready with ECMO (life support) to keep her alive in order to transfer to Edmonton and hopefully await a new heart.  They were literally standing in the room with all the supplies to start the intubation when Hope started to perk up a bit.  After much discussion, they decided to hold off on intubating for the moment.

They are now thinking that Hope has developed a blood infection, likely caused by a PICC line infection and that the antibiotics running through the line took effect quickly.  Hope is still on heart assistance meds and now heavily relies on them.  She is still in a bad place and could easily go the wrong direction.  Her bed is set up to allow ECMO to be started quickly if needed and she is under very close watch.

The other news of today was from GI.  After carefully reviewing everything they have on Hope, they do not feel that Hope's liver will disqualify her from transplant.  The transplant board will now discuss whether or not Hope is eligible and will decide whether or not a liver biopsy needs to be done to verify.  The liver biopsy can be done here in Calgary.  We should learn more in the next day or two.  In the afternoon they told us that Hope could be listed as early as tomorrow if everything goes through.

I feel very little emotion at the moment.  On Monday I was taking Hope out in the car with me, today we had to tell the doctors that we wanted to save her life at all costs.  Things change quickly and it takes my heart time to catch up with this present reality.  Normal parts of life carry on no matter what happens in the hospital and I find that very confusing.  Tonight we kept an appointment we had at a furniture store to finalize our fabric choice for a new couch.  It seems so silly to think about, but at times the normal things are what keep me going.  I'm fairly sure I haven't even begun to process Hope needing a heart transplant or the fact that her body has begun to shut down so quickly.  We have no idea how long a transplant could take.  Hope is too big to take a heart from a small baby, but too small to take a heart from a child.  She has a small population that would match her size and death is more rare at that age.  I still hate the very idea that another family's pain could be my joy.

I'm tired, yet struggle to sleep.  I'm able to smile, yet numb inside.  I feel hungry, but often feel ill after eating.  I want to be alone, yet crave the company of others.  I am lost in a confusing world of pain, fear and sadness.  Please do not cease praying for our family.  The journey we thought was going to coast for a time, has now begun to climb up hill once again.

22 comments:

  1. Praying and crying.
    Nadine

    ReplyDelete
  2. Amy, I will keep praying for you, Shawn, Sadie, and sweet little Hope. I think of you often and pray each time I do. You have all become very dear to me and without ever meeting I feel a deep love for all of you. You have great strength and faith Amy, and it is okay to feel as you do tonight. You never need to fear you are all alone, there are many of us standing with you in prayer. I send you my love, and I am sending many prayers heavenward.

    ReplyDelete
  3. Amy, My heart is breaking... My son crashed on the operating table for a simple procedure. When we arrived in the PICU, his "Christmas Tree" was lit up with 13 different meds, mostly for his heart. The Dr's had to keep him paralyzed, because if he started moving a toe, or anything his sats would fall hard. It was really bad! .3 epinephrine, 80 nitro... He eventually went on ECMO. It gave him the rest he needed, and now he's doing really well. God brought him to the brink (life support) and brought him back, all to show his strength. If he had given us our miracle sooner, maybe we wouldn't have appreciated what he did as much as this. Even Dr's told us he was a miracle :)Let God bring you to your brink, and trust that he will bring you back! I trust and I'm praying for you and your family! I hope it helps to hear that another baby was on ECMO and it helped him. It helped me when someone wrote me a note like this. Take Care of yourself! Atleast keep drinking... I lived on Ginger Ale for the stressful part, I couldn't stomach anything either. Praying and thinking of you Always! xoxo

    ReplyDelete
  4. :*( So incredibly sad here.

    ReplyDelete
  5. Continuing to lift you all in prayer. He has brought you and Hope through so much. May His peace overflow every moment of the day. praying....

    ReplyDelete
  6. Praying still....so sorry Amy...praying for all of it and that God would give you what you need every minute....

    ReplyDelete
  7. praying for you

    ReplyDelete
  8. Our prayers are with you and your family and for Hope to recover Inshallah( May god be willing as we say- a term that comes from Arabic Term)

    ReplyDelete
  9. Crying with you and pleading to Jesus for Hopes life.
    Love and prayers, Maryse

    ReplyDelete
  10. Sending Hope healing energy, and your family our love and support.
    Randi

    ReplyDelete
  11. I believe in God, and pray to Him for His help in keeping Hope here in her family's arms. I am also on the superstitious side. This may sound silly, but a while ago, my husband and I broke a wishbone. My wish was for Hope, and I won. I won't say what I wished for (there's that superstition!) but I will say that I will keep that wishbone for as long as I have to - a century if needed. Sending you prayers and love.

    ReplyDelete
  12. Again, I am crying tears for you and cant get over how how much your words say exactly how and what I was feeling through our journey with Kaiya. I have tried to express this to others, and never have I felt it more clearly than just now, reading your words. I have been thinking of you guys everyday. Hang in there sweet family.

    ReplyDelete
  13. God's will is sometimes the hardest thing to accept in life, and you are doing it so beautifully. I will keep Hope and your family in my prayers. God Bless You.

    ReplyDelete
  14. Hi Amy,
    My cousins are Kim and Lloyd. I have been following your story for quite awhile now. I don't have any words that other people havn't already said, but I wanted to let you know that you, your family and Hope are constantly on my mind. My prayers are for you dear Amy. God, his loving son Jesus, Mary, mother of God, and all the angels will take care of your sweet baby girl. It is for you that I pray for strength, guidence and above all peace. Sending you a bouquet of prayers and love.

    ReplyDelete
  15. I am so sorry for that horrible scare with Hope. The biggest thing that I took away from this post is that she is a candidate for a heart transplant and that her liver (hopefully!!!!) will not stop anything. Praying unceasingly for you all. And let yourself be numb right now. You're being protected that way. Love to you all!!!!

    ReplyDelete
  16. Praying and praying.

    ReplyDelete
  17. Courtney West and James Ruddle12 April 2013 at 13:05

    Praying for your family and especially for sweet Hope.

    ReplyDelete
  18. Hi Amy... I have no words for you. We continue to pray and hope and plead on your behalf. We keep praying for Hope and know God can do an amazing miracle in her body... you've probably seen this article floating around Facebook but here it is anyway. Just because as well intentioned as we all are, it's really good to read this kind of raw truth telling sometimes: http://natepyle.com/confronting-the-lie-god-wont-give-you-more-than-you-can-handle/

    ReplyDelete
  19. Praying for Hope's healing and that God will give you strength during this incridibly difficult journey.

    ReplyDelete
  20. Just read your update and will pray for miraculous healing for Hope and for peace for Mom and Dad.

    Marlene Spiess

    ReplyDelete
  21. It seems like another lifetime that you wrote about your passes and your home time.
    You and your little Hope girl are in my thoughts and prayers.
    Em

    ReplyDelete
  22. Praying for Hope and your family!

    ReplyDelete