Saturday, 16 February 2013

Policy Fail

Yesterday was very stressful and I chose not to blog, as I knew I would say things in frustration that I would regret.  As I was getting ready to leave the house I got a text that said, "They are taking Hope to the OR now."  I was obviously very confused and not comfortable with Hope being taken to the OR without Shawn or me there.  It turns out that the day before they had only adjusted Hope's PICC line and had not rethreaded it.  They were now going to take Hope into the OR to rethread her PICC.  They had failed to communicate this and we had not signed consent.  After numerous phone calls back and forth with the hospital, they agreed to take Hope without giving her any anesthetic.  They rethreaded her PICC line and everything went well.

Once at the hospital the doctors repeatedly apologized for failing to communicate that Hope was going into the OR.  While I had their attention, I decided to talk with them about Hope's bloodwork.  Since being back in Calgary, all of Hope's bloodwork has been taken peripherally and not from her PICC line.  Some days that means Hope is poked 3 times!  This is simply not okay with Shawn and me.  It's not that we don't want her to go through the pain, although we don't, but they damage her veins each time they access them.  In November when Hope had her bleed, they were not able to get an IV because her veins were so damaged from all the bloodwork.  After resting the veins for a few weeks, they began to improve.

I made it cleared that Hope's regularly scheduled bloodwork needed to be drawn from the line twice a week.  I was told this was not possible, as it is against hospital policy and will never be allowed.  To make a long argument short, if you refuse to allow them to do anything else, they will break hospital policy.  Everything they insisted up and down that they would never allow, is now what will be done.  I don't understand why a parent has to fight so hard to protect their child.  This is something that we should be discussing in order to protect Hope, not fighting about.

In frustration with me, the doctors were rude and hurtful.  When I shared that we wanted to get Hope home as quickly as possible in order for her to grow and have her next surgery, the doctor said Hope wouldn't be able to have it.  Once again I was met with negative attitudes about Hope's future and her potential to survive.  I am absolutely over the opposing information we receive.  One day Hope has a chance and a future, the next day her future is not possible and she's days away from death. I need the doctors to decide and stop taking us on this roller coaster.

The doctors are now planning a meeting for next week with all the important players to decide what is next for Hope.  We will make an official plan and be able to move forward with a plan that everyone has agreed to and can be held accountable for as well.  We are praying that this meeting is what we've been missing and will help us make some progress.  Hope is also being put under a complex care team, this allows her to have a consistent pediatrician so that her care is not passed from one doctor to another each week.  We are praying that this doctor will believe in Hope's life and will fight alongside us to give her a future.  We know that Hope's future is in God's hands.  We do pray that while she's with us on earth, that he provides fantastic doctors to care for her and make her life as wonderful as possible.

Today I am in deep need of encouragement and hope.  Yesterday left me broken and completely exhausted in this journey.  I drove home from the hospital completely broken and in tears.  Today I am going back to the hospital with hope of a better day.  Mostly because it's the weekend and no one will come to make major changes on a weekend.  This will allow me to cuddle with Hope and enjoy my time with her.  Her life is in God's hands, I want to cherish each day that God allows me to hold her in my own.


  1. Amy I just prayed that God would remove all negative labels off of Hope's life spoken by doctors or anyone else. A wise man told me once, "We allow doctors to diagnose, but we don't allow them to prophesy. That is God's job". He told me this after I myself had been diagnosed with an "incurable" life sentence. Today I am healed and I am so thankful to know that Hope, too, is not defined by their negative words. We still pray for 100% healing for your precious girl. Love you Amy! Don't give up.

  2. Amy, everytime I read your blog I see what a brave, faithful, courageous mom you are for Hope. We are trusting God for a great meeting with the team of Doctors who will give care to Hope, that Hope will continue to get strong and that God will continue to sustain you, Shawn and Sadie in this time. Hang in there.

  3. Wise words from Olivia.
    Praying for a refreshment for you today, Amy. Just remember: it's easier for us to plan for worst case than embrace the best: docs aren't immune to this tendency either. But that's what makes the positive ones who believe in your daughter's ability to fight the ones to listen to.
    Hope has hope! If she was really helpless - they would all without exception tell you that: but they can't. So - like Jay-Z says - 'brush em off if they contradict that.
    I am also thrilled she will be less vulnerable to the whims & opinions of a rotating team! I know you're discouraged - but I saw quite a few things to rejoice in in this post.
    So take heart: we're praying! She's loved. *you* are loved... And our God is working out his plan. Rest, cuddle & enjoy this weekend. No goodbyes Sunday night, either! :)

  4. Hang in there!! God is still on the throne, and the Dr's are only His hands! Dr's try to help, and in doing so, don't understand the journey that you have been on.
    They sometimes become insensitive as their jobs are so thankless, yet God can give encouraging words through their words!
    I will be praying for Hope's future, that it will be one of fun, laughter, and the best health in the world. Her Heavenly Father will take care of her, as he is her's already!
    Just as our earthly fathers take care of us, and stand firm with injustice, our Heavenly Father will keep her in His very large, and soft hand!
    He loves her more than you do, and He gave her to you, so hang in there....let Him use you to talk with the Dr's, and let Him heal this little angel, and be still and know that He is there watching over you all.
    This has been a very difficult journey. We are suppose to enjoy the journey......?? I know that somedays my journey is very difficult, but have not lost sight of the fact that God allows things to happen, and HE alone is the only one that can heal the broken hearted, set the captive free, and love on the unloveable.
    He has HOPE and will take care of her no matter what!!!
    Love to you, and your family!! ( I can't imagine how you feel or what you are going through....just know that we are praying for you)

  5. I pray for ceaseless joy. Joy that is a buoy and keeps you afloat amid so may setbacks and blocks that may overtake you. I pray the power that a hug and a smile holds and the flame it can ignite would overwhelm you and be a comfort that surrounds you as you face these things.I pray the fellowship that carries you and stands behind your family would continue to grow and strengthen as they walk beside you this. I pray you would hear the pis in God's whispers despite the emotions that erupt when such devastation is continually faced without reprive. I pray for strength. Strength to wake up, strength to not give up, strength to stay present and be aware, strength to continue to lean into the love that cascades down on your family and not harden in anger, strenght to focus on the joys and small victories and not dwell to long on everything that could go wrong, strenght to stay vunerable, strength to stand. Strenght for everyday.
    You are an unbelievable family and there are so many around you that are 100% for you. As trouble rises, it passes and even though the light at the end of the tunnel may be far off it is always glimpsed and nothing is ever completely cloaked in darkness.Be comforted in knowing you are so loved and hugged so tightly by those who never cease in their belief you will come out on top. Be comforted by the knowledge you are loved by a God who refuses to let you journey on this path alone and constantly asks to carry your burden so your legs do not buckle under its weight. You are surrounded on all sides. You are loved. Your family is brilliant in this and so far from ever failing. Be blessed in the knowledged you are not and never will be alone.

  6. Oh dear, haha. That "pis" is supposed to be "peace." Bahaha

  7. Amy, yesterday the fight left you broken, but remember that fight is what should give you strength. Parenting is much more than hugs and cuddles, it is about advocating. I know that it has been an uphill battle for many months and yesterday seemed like a mountain of doubt but remember that even with all those years of education and experience in the medical staff, YOU are still the best person to know what Hope needs! You proved that yesterday just by standing up for Hope and advocating for her health. You know that the best thing she needs is optimism and belief in her....I think its one of the reasons you write this blog, because you see hear from people you know and don't sending positive thoughts. Yesterday you may have felt broken, but today hold your head high and know that you were able to be a great parent for your baby girl. Sending my thoughts and positive energy. Hope has some amazing parents.

  8. As I read today's blog post, Psalm 121:5 jumped to mind. "The LORD watches over you -- the LORD is your shade at your right hand." I never noticed that before but interesting that it doesn't read, "the shade" but speaks of "your" shade. :) He has refreshment intended just for you -- praying that you will find Him and His gentle peace close to you.

  9. Hi Amy, I have been following your story whenever I get the chance. I came across it through a friend on fb.Your story has struck a very soft spot in my heart because I had to spend only a week in the hospital with my new born son and leave my husband and 2 year old son at home which was only 45 min away. I found this incredibly hard and all the while I was even getting positive news about my son each day. I remember when I fist found your story, I was in tears because I only knew a small, very small, portion of how you were feeling, and that small portion tore me into pieces! I can't even imagine how you are feeling and what you are going through. All I know is that God gives us moms super powers to go through what we go through. We were in the hospital for a week after my son had a traumatic entrance into this world, (was not moving or responding for 31 min). He needed to be monitored and put through many tests to make sure things were ok. I believe in miracles because every doctor and nurse that saw my son had to take a second look because they couldn't believe that he was the baby they read about in the charts. All scans came back normal and he is a perfect little boy. He started to show some increased muscle tone after about a month old, but is managing well with it and is seeing physio every month. Miracles do happen!
    The main reason I really wanted to comment is that I have read a few blogs here and there and I saw a lot about the food issues Hope has been having and you talked about her having some intolerances. Both of my boys and my sisters three children have food intolerances. They screamed and projectile vomited and had blood in their stool as well. I am sure not to the degree that Hope has had, but Hope is in a much weaker state. Our children have been diagnosed with what they call FPIES (food protein induced intercolitis). There are a number of proteins in foods that they cannot have. They are so sensitive to these foods, that when being nursed, we had to avoid eating the foods as well because it went through the milk. With trial and error we have taken out a number of foods in their diet. Dairy, wheat/gluten and soy being the main ones and then also eggs, nuts, beans/peas, fish, and all meats except for venison (or other wild animals). I see that Hope has a GI dr. as well and maybe you have already figured out the feeding issue. However I thought I would post this just in case maybe...just maybe this could help.
    I pray and think of you and your family often. And just remember...Miracles do happen :) stay strong and keep fighting. You are an incredibly strong woman and we can see that Hope has your strength as well, as she is such a fighter!

  10. Here is a website explaining FPIES

  11. How incredibly sad and upsetting! Having dealt numerous times with medical people who are less than polite and respectful, I can understand your frustrations. Praying that God is holding each of you in his palm. HOPE-ful, as always, from Ontario.