Friday, 12 April 2013

No Answers

Hope made it through the night without intubation and did fairly well.  She is still relying on the heart assistance meds and they haven't been able to wean them down.  This is not even the drug they hope to give her for a full 7 days, she was too sick to continue on that trial yesterday.  We may be in PICU for longer than we'd thought.  I could still see that Hope was tired and not feeling like herself completely, but she was MUCH better than yesterday.  Today many of the doctors admitted that they did not expect her to survive yesterday and were much more stressed than they had let on.

In the afternoon, one of the cardiologists that focuses on transplant patients had a meeting with me.  He reviewed all the risks of transplant.  Many people look at it is a cure, but it is truly just another procedure in a long journey with a broken heart.  She may need a new heart to stay alive, but life is not perfect because her heart is whole.  A transplant comes with a lot of highly toxic drugs and the risk of infection, cancer and a weakened immune system.  We are willing to do whatever it takes, but realize this is a risky journey no matter what.

Hope had blood work drawn today that will be worked up as they study her for transplant.  We're not sure how long it will take for her to get on the list.  They need to discuss things further with Edmonton and are not in as much of a rush now that she's more stable.  We'll learn a lot more after transplant conference on Wednesday.  Today it was mentioned that they may attempt to repair her aorta now that transplant is on the table.  Anything is possible so we're trying to stay openminded and just roll with it all.  We would really like a clear plan as the roller coaster is exhausting, but that's not an option at the moment.

Hope continues to lose weight and is under 6 kilos once again.  We worked so hard to get over 5 kilos and it was tough to hear that she was no longer there.  Her legs are tiny sticks and her body needs more fat.  Tomorrow they will attempt to add oil to her feeds.  Hopefully this works and she is able to tolerate it.

Thank you for your continued prayers.


6 comments:

  1. Praying now Amy. My words are not enough, but I pray the groans and aches of my heart for you are. xo

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  2. Amy, I have been following your journey with Hope for a while now. My son has HLHS as well. My heart breaks for you whenever Hope has a setback and soars whenever something good happens. You mentioned before the possibility of Toronto Sickkids. My son has had his 3 open heart surgeries there even though we live in Ottawa. It's an amazing hospital and has performed miracles (in my opinion). They saved my son's life, and many HLHS children that we know.

    My entire family is amazed at the strength Hope, you, and your family have shown throughout your journey.

    We're hoping and praying for Hope and your family. *hugs*

    Courtney in Ottawa

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  3. Thanking all powers for an sign of improvement. This is such a difficult journey for all of you. In a world where we fret about the weather and flu issues, these all seem so insignificant when I read this blog. Thoughts and prayers continuing from Ontario.

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    1. make that ANY sign

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  4. It's me again from Ontario! Just want to say I don't remember Sick Kids being talked about but it is a great place (not the eating disorders unit but anywhere else I have seen/dealt with.) I have had 4 surgeries there 2 I don't remember (on both my eyes for cataract removal on both eyes at 6 and 9 months old.) Open heart surgery at age 6 and a heart cath.) And mouth surgery for what I don't remember around 8 or 9 years old. I have seen many people at Sick Kids only two I or Laurie my m*ther did not like. Sick Kids was the place I went for many things and it was my "second home" at times so if you get a chance to go there don't be afraid of the distance. Know you will be in good hands.

    Knuffs to you (Dutch Hugs)

    Naomi

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  5. Prayers going out for Hope to take well to her feeds. May God continue providing Hope and all of you with strength as you once again ride this roller coaster. We will keep you all in prayer for Hope's heart to tolerate whatever it is they need to throw at her to help her survive. May any surgery be a great success and may through today Hope shows many signs of improvement. Hugs to all.

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