Saturday, 2 February 2013

Ranting and Raving

Being in the hospital has caused me to develop friendships with a lot of nurses, even some doctors.  There are times when friendship is simply not possible.  When we feel that our little girl needs something that she is not receiving, it's time to make a stink.  It's unfortunate, but with free health care you truly have to fight for things to be done at times.  This morning in rounds the bomb was dropped, surgery was cancelled.  This is not the same as being bumped for a child that is more sick than your own.  Your mother heart, although still annoyed, understands this and has a heart for the other family.  When the doctors simply change their minds, you feel nothing but frustration.

Today was a difficult day.  I felt frustrated, overwhelmed and annoyed.  I could not even pull myself together to pretend I was okay and distract myself.  It was a day of pure honesty, I was in a bad mood and there was no way to fake it.  It was my breaking point, the end of all patience and understanding.

Weekends in the hospital are horrible.  The nurses are all there working hard, but have hardly any resources with few doctors working or easily available.  I am not suggesting that doctors should have no family life.  I am simply being honest, being the family in the hospital...weekends suck.

Hope has started to throw up blood, at this point it is just small streaks.  Seeing as last time we found blood in Hope's poop and she almost died, I was very upset.  It started out as small amounts then, but turned into a massive bleed.  Our nurse today was fantastic and I asked her to find a doctor and gave her the heads up that I was not going to be very patient if things didn't happen.  I was too easygoing last time and allowed the bleeding to go too far, not this time.

When the resident came up to speak with me, I had a bad case of verbal diarrhea.  We were no longer going to stand for surgery cancellations and the doctors constantly changing their minds.  This was not fair to Hope or our family.  They needed to tell us what was happening immediately or we were going to insist on a transport back to Calgary.  If they're not going to do anything for us here, we are leaving so we can at least all live in the same city.  This particular resident is wonderful, he listened patiently and said he would see who he could get ahold of.  He also ordered an X-ray of Hope's stomach and has promised to keep a very close eye on her bleeding.

Within an hour, Dr. Ross was sitting in front of Shawn and me.  Excellent, it appears that being loud is effective once again.  It's unfortunate that it has to work this way, as it brings out a bad side in every mom.  Dr. Ross was very kind and patient with Shawn and me as we talked through what was going on.  He apologized for the constant changes in information we were receiving.  He agreed that it wasn't fair and promised we would have a decision by Friday.  That way we can decide as a family if Shawn and Sadie should move up to Edmonton next weekend, or if Hope and I will be returning to Calgary.  Either way, we will be together in the same city by next weekend.

The reason Hope's surgery was cancelled is because they are still not 100% sure that she needs to have this surgery.  Boston and Toronto have not come back with their answers on whether or not they would operate.  We should hear from them on Monday or Tuesday.  If both centres come back with the answer that they would operate, Hope will have her open heart surgery ASAP.  If they come back and feel that it can wait, Hope will wait for her surgery.  They are hoping she will be able to wait months or even years for the surgery.  This would give her some time to grow and become more stable for such an invasive procedure.  As soon as Hope's Chylothorax (it has been confirmed) is under control, they will get us back to Calgary so we can be together as a family.  Hope's left lung has drained over 1000 mls of fluid.  This fluid is full of so many important things that her body needs.

Hope was started on steroids and another medication that are meant to stop the body from leaking fluid into the lungs.  If this does not work, Hope will have to stop receiving feeds all together and will only receive the liquid nutrients once again.  After working so hard to get Hope eating again, this would be really discouraging for us, although we are willing to do anything at this point.  If that does not work, Hope will have to go in and have surgical intervention for the chylothorax - (where they would ligate the thoracic duct).  They would do the surgery right away, but it is only effective 50% of the time.  Therefore, if the other options work, it is better to avoid the potentially useless surgery if you can.  It was discussed that, if they did the heart surgery, they may do the thoracic duct at the same time but this is still just a possibility.

We are emotionally exhausted, extremely frustrated and tired for feeling like we're always fighting for Hope to get the care she needs.  We had an extremely long meeting with a GI doctor that actually seemed to care about Hope and wanted to help her.  We really like a few of the GI doctors in Edmonton, but find that they have seen Hope do crazy things for so long that they don't know what to do and have done nothing.  We are praying that this doctor will take up Hope's cause and will fight for her.  That he'll dig into her bleeding, diarrhea and feeding issues and FINALLY find something that will help her.  Please pray for a miracle.

Thank you for continuing to pray and for putting up with our constant needs.  I'm sure you're getting sick of hearing that we're going for surgery, and never going!  You are all a gift to our family and we are truly blessed to not be doing this alone.


  1. Wow. Thanks for sharing all this. Here's to truth and honesty on this crazy journey. I pray you sleep deeply tonight, and that some answers begin to become clear very soon because the right people are making good, God-inspired decisions about Hope's care. Praying for the things you've raised, and sending love and prayers from Toronto.

  2. i recently started following your blog after a facebook friend posted the link. i stayed up much of the night reading your posts (right from the beginning)and felt like i was on a rollercoaster. sooo many times to be excited about hope's progress and so much heartbreak with the setbacks. our daughter just turned 3 and we've added hope to her prayers that we say every night - we pray for hope to be happy and healthy.

    when our son was born, he spent 2 weeks in the nicu in red deer because he was having trouble regulating his oxygen. by no means am i comparing those two weeks to what you have gone through, but i can definitely relate to the emotional rollercoaster. there were a few times that i came "unglued" on the doctors/nurses because i didn't think that they were doing enough. we spent 2 weeks at ronald mcdonald house and even though it was a wonderful place to be, all i wanted to do was go home. i hate to say it, but i was mad when i saw the other babies being discharged because i was so jealous. i wanted the fairy tale ending - to go home the day after having our baby with my hubby and daughter in tow.

    we are "HOPE-ing" and praying for a fairy tale ending for you and your family. we're praying for you to all be home in calgary, right where you belong.


  3. Cheryl, in Montreal2 February 2013 at 22:19

    Dear Amy and Shawn,
    Keep ranting and raving's what God wants you to do for Hope. You are both her voice. The doctors and nurses are overworked and overwhelmed too. They have so many critical babies to attend to day in and day out..after a while they have to unplug and your so called rants brings them back to YOUR reality. God is with you both in this and working through the TEAM. We are continuing to keep Hope in our prayers and thoughts and each day pray that THIS will be the day for Hope to turn the corner and not look back. She is such a beautiful little girl and so inspiring and giving life all she has got to give in order to pull through. Just live in the moment as much as you are doing your very best and then some. May God give you both TOTAL peace and rest in body, mind and spirit and may He heal Hope and stop any pain and discomfort she may be having. God bless everyone involved in her care and may He continue to shine His light so all those who need to make decisions make the right ones as soon as possible. We pray this in Jesus' name. Amen.

  4. "I will be with you in trouble." (from Ps. 91:15)

    This is the promise given to you by the Lifter of Your Head, your Shield, your Rock, your Comforter, your Very Great Reward.

  5. We will keep praying for a miracle and will keep believing that God is doing and will keep doing a mighty thing in Hope's/all of your life(s). Praying tonight for rest and peace for you to face this week ahead.

  6. Hi Amy & Shawn,
    I've been following the blog for some time now and hope that Hope can get her much needed heart surgery that she needs!! Praying that you will find peace and comfort and that you guys can re-unite as family once again!! Will be praying and thinking of you lots....

  7. Thanks for sharing what's going on, not only with Hope and the doctor's but also how you feel. So important to get that out! Praying for everything still...

  8. Keep writing...writing has saved my life at times. The honesty you share in this blog is refreshing. I wish all Christians could be as honest about their feelings as you are. We could all be God's family in such a deeper way. Take good care and Knufs (Dutch hugs)


  9. Dear Amy
    You continue to fight, never take no for a answer. While my son was at sick kids ( cardiomyopathy ) We place a saint card next to him and prayed everytime, even when we thought no one was listening. Stay strong, kid are tough and from what I have read Your Hope is one of this toughest around.

    always in our thoughts and prays