Wednesday 10 April 2013

From Pass to PICU

When I was in labour with Sadie as well as with Hope, I found staring at one object was the most effective way to deal with the pain.  If I closed my eyes I wasn't able to control the pain I felt.  Focusing on a non-moving object seemed to help.  Today I found myself in that place.  Laying in the bed next to Hope, unable to close my eyes or the pain would take over, staring at a specific crack on the wall.

After days of passes and talking about going home, life came crashing down today.  Hope has been on passes, but has truly plateaued.  We are not able to balance her fluids, her electrolytes or her diuretics.  It's frustrating and seemingly endless, I simply assumed we'd find a way eventually.  Yesterday before leaving on our pass Hope had a routine echo done.  Once completed, we went out the door and spent the day outside of the hospital.

This morning Sadie woke up with a cold.  That destroyed my plans of taking her into the hospital to pick up Hope for her pass and I was unsure of what I was going to do.  I didn't know if I should bring Hope home or not.  Eventually Hope would be home and we wouldn't be able to kick Sadie out if she had a cold.  I could not decide what to do.  As I put on our shoes the phone rang.  The hospital was calling to inform me that Hope was not doing too well and would not be able to go on a pass.  I was suddenly stuck with a daughter that needed me at the hospital and a daughter with a cold that could not go with me to the hospital.  I am so tired of being torn between my girls and I was stressed to the max.  After calling Shawn to ask him what I should do, I pulled myself together and started begging all my friends, once again, to help me.  I have used every favour a person can ask for in a lifetime of friendship.  I have a lot to pay back and I have some amazing friends.

Sadie and I went to the hospital and transferred her carseat in the parking lot.  She would spend the morning in one place and the afternoon in another.  I went upstairs and found Hope with laboured breathing, but not looking horrible.  She was extremely grumpy and would cry anytime she wasn't able to see me.  As I sat with her on the bed I could hear the cardiologist speaking to the other doctors.  I knew they were discussing Hope and recognized right away that something was wrong and prepared myself for the devastation.

An amazing cardiologist walked in with a whole gang of people.  She has had to give us bad news on numerous occasions and I trust her, I was glad she was on.  She explained that Hope was stuck.  She wasn't getting strong enough to go home, but was often strong enough for passes.  She shared that in our current position, Hope would likely never get out of the hospital.  She then went on to talk about the echo.  Hope's aorta continues to have high pressure and the right side (only existing side) was showing decreased function.  A meeting was called among the cardiologists this morning to discuss what to do about Hope.  They had decided that Hope's heart was not going to get better, the pressures were causing the fluid in her lungs and surgical repair was not an option and also much too dangerous.  The consensus was that a heart transplant was her best option.

Hope's liver has always stopped her from being a transplant candidate.  They have questioned whether or not her liver was improving lately.  The ascites is now gone and the varices have improved.  The ultrasound shows the clot is still there, but does she have portal hypertension?  (you may need to google some things, too lazy to explain tonight)  If Hope does NOT have portal hypertension, she is a candidate for a transplant.  She will need to have further testing, a liver biopsy or liver catheterization, to rule this out and properly look at the liver.  We're not yet sure if this can be done in Calgary or if she'll be sent to Sick Kids in Toronto for this procedure.

Hope was sent to the PICU this afternoon and started on Milrinone, a heart assistance drug, to kick her heart into gear.  If this week on Milrinone makes a big difference with Hope, we'll know that she needs a new heart.  If Hope does not do well on it, the heart may not be the issue.  If the hypertension is there, we may need to look at whether Hope could receive a liver and heart transplant at the same time.  We are not even sure this is possible, but it is being looked into.

We are functioning, only because we are used to being numb and hit with horrible news without warning.  We are in pain though, this is not what we were expecting and it is painful.  Three weeks from today we take possession of our new house.  We are excited, but it seems so meaningless in light of Hope's condition.  Packing has become more of a pain and less enjoyable, but is a nice distraction at least.  I am completely over having to call Shawn and dump horrible news on him while he's at work.  I can't imagine finishing work after a phone call like that.  I would likely be in a bathroom stall in tears for the rest of the day.

We just told Melanie (Sadie's Nanny), that we likely wouldn't need her full time in May and June.  That has clearly changed and it's frustrating to know that we will continue with that expense.  God has blessed Shawn with a great job that allows me to stay home with our kids.  We never expected to hire a Nanny when I was at home.  Thankfully Melanie is amazing and Sadie is more stable as a result, some expenses are too valuable to remove from our lives.

Please pray for Hope and for our family.  Although we have not yet been listed, I already think of the family that will lose a child in order for Hope to get a new heart.  Somewhere a family lives with a child that they may have no idea they will lose.  That breaks my heart and yet I am already thankful for the difficult choice they will make to donate that child's organs.  My heart is in pieces and once again I am forced to find the strength to carry on.  Thank you God for giving me that strength.

21 comments:

  1. I'm so sorry to read this, Amy.... praying for your family and sending extra prayers and strength to Hope today.

    ReplyDelete
  2. Praying That Our God Who Is Able To Do Immeasurably More Than We Can Ever Hope For Or Imagine Will Supply Exactly What You Need Tonight.

    ReplyDelete
  3. Amy I am just heartbroken to hear of Hopes setback. You dont know me at all, I have followed your lives for awhile now, as I have a grandson that has hypoplastic left heart. We have lived the life you are going through and nobody understands unless they are living it! We are lucky enough that our grandson has just turned 4 and after having his last surg in may of last year, has recovered after a stroke, paralyzed diaphram...etc etc....and is home amazing us daily. I pray that someday this happens for you. I know the emotional chaos the ups and severe lows that you are going through, and wonder how you will ever get through them. Knowing that even though you feel sooooo alone, there are many of us here for you praying and sending hugs to you. I hope that soon you will get the answers that you need, whatever they may be, and that you have the strength to one day at a time, be able to deal with them. Take one day at a time, know we are all pulling for Hope, you, Shawn and Sadie. Its a really rough road, just know you arent alone! Hugs and prayers and strengh, from our family to yours!

    ReplyDelete
  4. Oh Amy, I'm so so sorry. My heart is so heavy for you. I continue in prayer for you every day and for sweet sweet Hope. I am praying for miracles. I am praying for healing. for clots to dissolve completely, for pressures to normalize and function to improve. May our Abba come so so close to each of you and bring healing, peace, wholeness and life. Our family is crying out for healing for yours. May His peace envelop you...

    ReplyDelete
  5. Praying for you, Amy, Shawn, Sadie, and Hope. Must be so hard to be on the emotional rollercoaster ride you have been on for this past year. But God is in control, He loves each one of you so much, and this may sound like a pat answer, but He will work everything out for the good for those who love Him, and are called according to His purpose...Rom.8:28!! I will definitely pray for God to heal Hope's heart, and continue to give you the strength and peace you need throughout this ongoing journey.

    ReplyDelete
  6. Jesus, in the face of such crushed hope and numbing exhaustion... You who knew the agonizing pain of the Father's will, let the wind of your Spirit blow across their hearts bringing comfort in a medium that can be absorbed and renew hope and faith and strengthen trembling knees to endure.

    ReplyDelete
  7. I am praying for you, your family, a miracle and the amazing friends and support system you have. I could not imagine what you are going through but as you know God never gives us more than we can handle...although I imagine at times that is hard to believe. Please feel strength and peace from the people that you know and those you don't even know that are praying for you all. In His Holy Name....

    ReplyDelete
  8. As a parent who has had a child die - knowing that through organ donation my child still lives on - brought some small comfort and peace. I needed to know some good could still come out of my son's death. I am so sorry you are going through this.

    ReplyDelete
  9. When we were, briefly, faced with the possibility of a transplant I felt so sad for the family that would lose their child so mine could live. And when the hope of a transplant was gone we knew that we would donate whatever we could of our little Eva. We were so sad that there was nothing they could take because she was too young for most things, and her heart was not something anyone else would want. I read your blog every time with tears in my eyes as I remember our own journey. And I hope for your little Hope all the time.
    Much love, Em

    ReplyDelete
  10. My heart saddens for you, Shawn, Sadie & Hope today. As I read your blog my eyes grow teary. Amy this rollercoaster you have been on is devastating to receive news of this degree tonight. It seemed over all Hope was improving, putting on a little weight, being able to take those passes and leave the hospital each day, taking her feeds satisfactory and then a set back then she would surprise all with coming back around. Hope is one strong little girl whom God has brought into your world for many reasons. This must seem like God is quitting on you. As you know Amy God can do miraculous things .. he never gives us more than we can handle. You may wonder if you have enough strength within to deal with everything. I know in my heart you do. God is with each of you all the time. Please all pray with me as I pray for Amy, Shawn, Sadie, Hope, all the specialists, nurses, family members, friends & volunteers to answer all their prayers. May god touch each with his loving hands and touch Hope to mend her heart so she too may have many years of life and laughter. With all that this family & so many others have been through may God reach out to them and ease their burdens. May Amy keep receiving the strength and peace she needs to carry on her daily routines. May she be able to adapt her time with Hope, Sadie & Shawn to be able to live as close a normal life as possible while being there for each of them. Thank you God for giving Amy & Shawn Hope for this first year .. for enabling them to see your wonderful work from so early on in Amy's pregnancy, for Hope being here to celebrate her first birthday, for all their loving family,friends, specialists, employees who have been with them through the last year and a half and the many volunteers. May Hope fall into the category of a new heart, may she find comfort in the way it works and adapt to the world ahead of her. Lord please touch each of them and all that pray , not only for Hope but also for Amy, Shawn & Sadie . Lord I ask this is your name . Amen.
    Hugs to each of you and a big thank you from my heart to each of you who are there helping even if just with an email or call. Prayers continuing.

    ReplyDelete
  11. Praying God continues to give you and Shawn strength in adversity...also praying that God will provide a way.

    ReplyDelete
  12. I was crying out to God this a.m. because my 4 year old has misbehaved every day this week at school and I was upset that nothing seemed to reach him. Then I read your latest post Amy, and all that worry of mine dissipated and my heart just ached for you. The world looking on might wonder how you all cope through this literal nightmare but we christians know exactly how. God's perfect grace. I cry out to the Lord for healing for Hope. I don't understand why this is happening but I do trust God is Sovereign. Praying God's perfect will for you all and obviously praying for a miracle for Hope. Thanks for allowing us through Darcy to be at least observers of this horrible wilderness you are in so we can pray, encourage and support you all. So sorry for yet another major setback. I know we don't know eachother but Jesus is the tie that binds us together. You are loved and cared for by so many and rest assured we are praying. Perhaps someone can set up an account at a bank where folks can donate funds to help you guys with the extra costs. Praying for God's provision and wisdom. Please hang in there.....sending hugs.....xo Liz

    ReplyDelete
  13. Amy. I am a stranger to you but a friend of a friend of yours. If you find yourself in Toronto I think we will end up meeting. Anyhow as someone who hates asking for help it's ironic that it blesses me when I can help others. When your friends help you out( and you hate asking again and again) I can assure you that allowing people to help you blesses THEM!! Many people wish they could practically solve this for you. If I had the means I would fly to your house and clean it or something. People want to help you over and over. Any mom would do it!! I am following your updates, praying and living you here in Ontario.
    April

    ReplyDelete
  14. * praying and LOVING not living you here in ontario

    ReplyDelete
  15. Amy, someone in our church put up a request for pray in the fall for Hope and I have been following your blog and praying for your family.You have been heavy on my heart lately. I feel for you as a mom being torn between your kids. Now I want to cry with you.But instead I will cry out to our awesome God who knows all, who has ypur family in His hands, holding you comforting you caring for you.

    ReplyDelete
  16. I have been reading your blog for the past few months and can't even describe how happy the day passes had made me and the amazing celebration you organized for Hope's 1st birthday. I know that is was a monumental day, and I can just tell how happy your heart is that she got to spend her 1st birthday outside of the hospital with the people who love her most. It is difficult to hear that after some positives, baby Hope has more challenges ahead. I am no one to you and this journey you are on, this hard, roller coaster ride doesn't impact me directly, so I recognize that the pain is a billion times worst for you, but it kills me to hear these news. I can't even imagine what it must feel for you and your family. My heart aches thinking about this precious little girl, your love for her, her fight and perseverence. You amaze me. I don't care that your house is messy and Sadie will not hold it against you for forgetting to buy milk. Trust me, the fact that you are able to get out of bed each and every morning and do your best, try your best, love your daughters and your husband with all your heart, is plenty. Is more than enough. I do not know if I would have your strength. You amaze me. You are an inspiration.

    ReplyDelete
  17. Still praying for a miracle for Hope. One day, one moment, one breath at a time. Much love and prayers to you and your beautiful family.

    ReplyDelete
  18. Gosh, so sorry for you all and praying for a suitable transplant. Must be so hard to be torn between your two daughters but i am sure your friends are happy to do whatever they can to help. Stay strong for each other, Bee x

    ReplyDelete
  19. Too sad to read! Thoughts and more prayers. Ontario team.

    ReplyDelete
  20. Praying for you and your family! May God show his faithfulness to you in ways that you never imagined. I am so sorry for your pain. You all deserve some special blessings and relief. God is with you!!! Praying that your strength becomes renewed as God continues to work on Hope. Praying, praying, praying...

    ReplyDelete