Wednesday, 24 April 2013

Blessings and Burdens

I want to update on the positive side of things first.  I don't want an awesome blessing to be lost by the garbage that happened today.  Hope was taken down to the OR at 4 pm and had her liver biopsy and varices treatment.  She did very well, and came back without oxygen and was stable.  Hope was able to come back to the ICE unit and did not have to go to PICU.  That was a blessing.  Hope's liver biopsy was successful, and we should receive some results in the next few days.  She had to stay on bed rest for 4 hours after the procedure and I wasn't able to hold her.  Being so late in the day, the doctor called up to give me a report as he headed home to his family after finishing with Hope.  Once again, the varices were so small that he did not need to treat them!  Praise the Lord that these varices have been so much better than anyone ever expected them to be.

I talked to another specialist this morning and had a couple more stop by, when I was in the meeting with the transplant team.  That meeting was the worst meeting I've ever had with a doctor.  I've had some pretty awful meetings where we are given horrible news, but I have never felt so angry.  I will say that much of the transplant team is away and this should not represent who they are, as it was just one person being rude and disrespectful.  The cardiologist that attended the meeting is one that Shawn and I grew to respect and value over our time in Edmonton.  I believe that trust is earned and once it is broken, it is extremely hard to repair.  Today I lost a lot of respect and trust for this man.

The doctor came in and asked me how I felt about everything.  I shared Shawn and my concerns that everyone would continue to wonder what to do for Hope for the next few months and that no one would make a decision and we would be stuck in limbo land forever.  He began talking about why transplant might not be good for Hope, and why we needed to consider how Hope felt about having to go through all these surgeries and the fact that she might not want to try anymore.  He basically shared that parents fight for children, but maybe that child no longer wants to fight.  He said that we could move on if we lost Hope and a lot of other rude and inappropriate things.  It was not until the end of the meeting that he informed me that these were all his opinions and in no way reflected the thoughts or decisions of the transplant team as a whole.  It would have been helpful for him to lead with that.  I sat through a meeting that was absolutely taking away all hope of a future for Hope, and fought for her life, her value and her right to receive care.  I did so with the belief that this doctor spoke on behalf of his team.  If he wanted to share his personal opinions, which I could care less about, he could have done that with me privately in a more appropriate setting.  Using a professional medical meeting as a soap box to share your personal opinions, that do not reflect my own, was inappropriate and uncalled for.  It was also completely unfair to me as I was not expecting it and was alone.

The synopsis of the meeting is that we don't have any more information than we did before we arrived. The team is away at a conference and a decision will not be made until next week.  Most of our testing and assessments have been completed and tomorrow I will begin pushing for a transfer back to Calgary.  I would especially like to get back after what happened today.  I'm frustrated with the constant changing of Hope's care and would like to have ONE hospital that cares for her so I'm not told two different things all the time.

Tonight after leaving the hospital, I tried to run around and get some things done while I was alone and did not have the opportunity to spend time with Shawn and Sadie anyway.  After 30 minutes I had a terrible migraine, felt exhausted, overwhelmed and burnt out.  I'm now back at the apartment and planning to head to bed early.  I want to go home.  I want my family around me again and I don't want them to change everything about Hope's care, just to send us back and have it all changed once again.  Please pray that I can return to Calgary tomorrow or on Friday at the latest.  I'm absolutely done.

18 comments:

  1. Amy,one thing that is so apparent to me as I have followed your journey with Hope since the beginning is that Hope proves over and over that she wants to be here. She is such a fighter and continues to fight every day. I'm so sorry that a professional would give you such a hurtful and devastating opinion but know that all of us who care for you and your family and pray daily (sometimes hourly) for Hope and for you and Shawn and Sadie BELIEVE that this is what God wants, this is what Hope wants and we BELIEVE that Hope will be home with you one day, playing in the backyard with her big sister. God, send your spirit tonight to comfort Amy, heal her and take her migraine away. Speak words of comfort to her Lord and help her to feel renewed with a new day. Grant her peace and bring her home to her family soon. In your holy name, lord, amen.

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  2. Karen Richardson24 April 2013 at 21:56

    I agree wholeheartedly with the above comment.

    As I have shared with you before, I also pray regularly that Hope would hear the voice of the Lord clearly, that she would listen to Him. That if He calls her home, she would go, knowing that He will lovingly care for and comfort the rest of her family. And that if He is calling her to remain with you that she would be STRONG and FIGHT and know that He is good in the midst of pain, good in the midst of suffering and that He will work it all for good.

    And...I see what the previous person posting sees. A courageous little fighter. :) Seems to me the Lord is with her like a mighty warrior.

    Ha ha, a speech from Aragorn near the end of the Lord of the Rings comes to mind. Paraphrased and edited: "A day may come when the courage of men fails...but it is NOT THIS DAY! This day we FIGHT!"


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  3. Hi Amy...I work at Sick Kids in Toronto and I do not want to add additional complications to your already complicated situation, but have you considered asking for a second opinion regarding Hope's care from another facility? Just wondering if having fresh eyes and ears would be beneficial? Heather G:)

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  4. Wow, that doctor was out of line... I think some of those doctors suffer from a "god complex". how dare him give his personal opinion when you were vulnerable and alone before such a big meeting. Thankfully Hope's care isn't up to him. You are Hope's mother, you know her best, he is not seeing the whole picture but you are there through it all. praying for strength for you today and that your migraine goes away and for this doctor to know God's saving grace.

    One day at a time....

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  5. It is so AMAZING that Hope is doing well with the varicies!

    I think it was out of line to say you and Shawn could move forward without Hope. That is not appropriate.

    Further, I agree with the post above regarding Hope's willingness to fight. That little girl has repeatedly proved people wrong.

    Physicians/Surgeons probably believe that Science and continued medical intervention are what are keeping Hope alive (and not God or her spirit). So continuing to intervene in a situation like this, probably feels meaningless and may even feel like cruelty to the doctor.

    I would like to believe the best, and say that the physician's comments reflect their ethical discomfort with a child suffering.

    Having said that, they need to work their ethical discomfort out within their surgical team, not on you!!!!!

    I will be praying for the surgical team, the doctor who is clearly struggling, and for you and Hope. Hope is a fighter, she wants to keep going, and I pray that God's plans are revealed.


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  6. That gets me so angry! Hope wants to live! She doesn't want to give up! What is amazing about all this is that Hope won't have any memory of it. So even though it is horrifying for you to watch her suffer and go through so many treatments and tests, she's not going to remember any of it. She is nowhere near the point where you stop trying. I can understand this dr seeing patient after patient, seeing so much pain and suffering that he has turned a bit numb. But you put his comments out of his mind and keep fighting for your girl. God gave Hope you as a mom for a reason. Praying for you guys!

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  7. WOW imagine a Dr. saying that. That reminds me of a Dr. after I woke up for a suicide attempt (I am a survivor of abuse and have many mental health issues because of it.) where I almost died a Dr. had the nerve to ask me "do you want me to treat you." The only reason I did the act was because I wasn't treated two weeks in a row asking for admission at the ER telling them what I would do and the third week I did it because no one would help me. All I could think is how unethical the question was. The same with the Dr. who talked to you. He was totally out of line, unethical and if he wanted to have that sort of conversation with you it could have been done in a totally different way. I am so sorry you had to go through that. Like me when the Dr. asked if I wanted to be treated and felt like my life wasn't worth anything to that Dr. because of what I had done. You were probably made to feel like all your efforts. All the efforts Hope has made and those of family and friends were negated. I am so sorry. Some Dr.'s have no clue...even those who are so called specialists...as to what they are saying and doing to their patients and their families. Please know there are a host of us out here who really listen to you when you write. Think often of you. Tell others about you. Pray for you and your family. WE CARE! WE HEAR YOU! God is sovereign and on his throne working all this through. I know this well because I am 41 and still alive...though I have been suicidal since I was between 10-12 years old. I have learned how to get help. And you need to remember all of us out here who care deeply for your family. Most of all God cares deeply for your family. Take good care of your self. Blessings.

    Naomi in Ontario

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  8. Oh sweet Amy! Thank you for sharing outright - it helps in knowing how to pray. I'm sorry you have experienced so much pain! We believe in a God who does the impossible & does things for His glory. Each time I think of Hope's name, I feel hope. May God minister to you peace, strength, rest and joy like only He can. Praying for a transfer back to Calgary this weekend for you all! Hugs from a far.
    Wendy - Norway.

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  9. Amy,
    I have followed your families journey and have senesed how God has been with yoy every step of the way. I can't imagine what you Shawn and Sadie have been through. This could prove to be devastating to any family, yet what I've read and what I see from your family is that you are open to what God has in store for your family and will accept His guidance. I can't imagine the toll that this has taken on your family over the last year and a bit but I do know that you have been an inspiration to a lot of people. I don't know what God has instore for you and your family but I do know that He loves you and has brought you this far. He has given you this trial to bear for some reason and I believe that God is using your situation to reach out to many other people. I pray that before next year we will read about Hope being released from hospital and being able to return home and live a normal life. God does love you and from all that I've read, you know that. Keep that in your heart when things beome unbearable.

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  10. Amy,

    I too am a follower of Hope's journey and I have prayed for you and your family often. Please don't let the ignorance of people take away your hope for your daughter and family! God has a plan for Hope and I believe that he is the only one who knows what that is. She will be an image of his miracles!!! He has given so many small blessings to her because the big plan is ahead. She is a fighter and so is your family. Keep pushing for her. Shame on that doctor. God is in charge not him! God loves Hope and has given her an amazing family! He will provide the answers!!! Stay strong and know people are praying hard for all of you! Wishing only miracles and blessings to you!

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  11. Having dealt first-hand with the Ontario medical profession over the past week, I can truly empathize with your anger and frustration. Just when you think things are moving in a positive direction, one seemingly uncaring person comes along and bursts your bubble. And when you are already fragile to the breaking point, that one person can make a huge difference in how your day proceeds from there. I experienced the same type of issues yesterday. I truly wanted to reach over and shake the doctor. I have to ask myself if they know (or even care) about the impact they are making on family members. Then add the patient to the mix! :( All Blessings, Amy. WE are all still on your side! Thoughts and prayers from Ontario.

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  12. I feel that I must play the devil's advocate a bit and say I can understand where the doctor is coming from a bit. While I fully support your and Shawn's decision to continue Hope's treatments, and I truly believe that she is still showing signs of wanting to live, there are other cases where the child does not have the same fight in them. It is good for the doctor to confirm that the child is still wanting to live and fight to survive, but it is unfortunate that he went about it the way he did rather than by just reading your blog and seeing all the wonderful pictures of Hope that show her so full of life! I hope and pray that you never have to face that question again. I pray that Hope will grow and thrive so much that any crazy doctor who even sees her for just a few minutes will be able to see the life in her and will be inspired to fight for her life as much as you do!!! Blessings to you all!

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  13. to confirm that the child is still wanting to live and fight to survive, but it is unfortunate that he went about it the way he did rather than by just reading your blog and seeing all the wonderful pictures of Hope that show her so full of life! I hope and pray that you never have to face that question again. I pray that Hope will grow and thrive so much that any crazy doctor who even sees her for just a few minutes will be able to see the life in her and will be inspired to fight for her life as much as you do!!! Blessings to you all!

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  14. Oh sweet Amy! Thank you for sharing outright - it helps in knowing how to pray. I'm sorry you have experienced so much pain! We believe in a God who does the impossible & does things for His glory. Each time I think of Hope's name, I feel hope. May God minister to you peace, strength, rest and joy like only He can. Praying for a transfer back to Calgary this weekend for you all! Hugs from a far.
    Wendy - Norway.

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