Friday, 7 September 2012

A Test in Trust

I'm all alone in the Ronald McDonald House, I left my mom at the hospital with Hope and escaped.  I was so disappointed, frustrated and sad after rounds this morning.  I simply couldn't stay any longer and needed to get some fresh air and some time alone to think through some things.

This morning we were told that the doctors are not willing to operate until they can figure out what is wrong with Hope's stomach, and resolve it.  They also want to get the results back from her blood work on whether or not she has a clotting abnormality.  The results will take at least two full weeks to return.

We don't have to be in Edmonton, unless they plan to operate.  Now that the heart cath has been completed, we could return to Calgary Children's hospital until it's time for her surgery.  We simply did not feel comfortable there during our last stay and didn't feel like we were getting any closer to a solution.  Once it was decided that they were not able to do any more for Hope, they sent us here.  I made it clear to the doctors this morning that we are NOT leaving until she has her surgery.  I understand that she needs to be stable to have it done, that's fine.  We are willing to stay here as long as it takes for GI to figure out what to do for Hope and for her clotting to be investigated as well.  We get a higher level of care here and they seem to be more thorough with her care.  Once her Glenn has been done, we are happy to return to Calgary.  The cardiologists are amazing in Calgary as well and will do an excellent job following Hope.  We just don't find that the different teams in Calgary communicate well and Hope seems to sit around waiting all day.  Things happen faster here and we feel a lot more informed in the process.

Shawn put it well on the phone today while I was venting, "the only consistent things in Hope's care is the inconsistency of information we receive."  It's really true and very frustrating.  GI came to see Hope in the afternoon today, this time the head of GI was there.  He looked at Hope and in a few minutes was able to give us the answers that we have been waiting for.  It took 3 weeks and I don't know how many doctors, but they finally gave us a diagnosis.  Hope has a hernia that is causing her lady parts to be very swollen.  We knew she had one in her belly button, now we know that she has two!  This means another surgery for Hope, someone is supposed to come see us soon to tell us when that surgery will be done and what it will require.  Her swollen tummy is a result of her liver clot, this was caused by the infection she had before her first surgery from the central line in her belly button.  There is a chance that this could resolve on its own, but will require surgery if it doesn't.  I think we need some serious prayer, how many surgeries is this little girl going to have?  I'm not sure I can handle too many more.  The good news is, we have some answers.  The GI specialist does not think that Hope's stomach issues should delay her second surgery.  He doesn't see how they will be a problem for the heart surgery and is going to pass that message on to cardiology.  We need to pray that everyone agrees and we can cross this off the list of reasons they won't operate on her heart.

Now we simply continue waiting.  At this point I believe we still need to wait for the blood test results on the clotting.  Things change all the time here and we could be told we don't need to wait or that they only take 3 hours to never know what will happen!  They are going to begin some treatments for Hope's swollen tummy and see if they can make an impact without surgery.  Please pray that the medications would make a HUGE impact and that she'll begin to heal without surgery.  I feel so badly for Hope some days, why does she keep getting more problems loaded onto her?  I have to believe that God has a huge plan for her life and that he is already using it to impact so many.

I really don't like it here, and yet I'm willing to stay as long as it takes to make my baby girl stronger.  I believe that only God could give me that strength and the trust in his perfect plan and will for her life.  Shawn isn't a fan of this place either, and he encourages me to fight for our girl and is fine with me pulling a PETA move and chaining myself to her bed! (not that I would!)  I felt strongly this morning that God was giving us the boldness that was required to fight for Hope.  Running away from the hospital to get some time to recharge is always important.  Hopefully I wake up ready for another day tomorrow.


  1. I am the mom of a heart kid who is now 21. I have known HPLH kids and their families.
    We spent a lot of time in the hospital.
    I remember feeling really alone and full of horrible anxiety about my childs future.You dont need to do this alone.
    I really strongly advise you to look up "The Children's Heart Society" for some support.
    You are not alone♥
    I will pray for you and your little sweetpea Hope!

  2. Hi Amy and Shawn! I too am I mom of a child with a heart condition in the HLHS family. Our daughter is now 6, and after living in Lethbridge and having to transport ourselves up to the Stollery for every op and procedure, we now live here in Edmonton! Irony at its best. I'm not sure if you know Lucretia Apperloo, but she posted your blog, and naturally I was drawn to it! It's obvious from your writing that you are a strong believer, as are we... in fact my husband is a pastor here. I would love to get together with you sometime (for a little distraction?). If you are up for it, you can email or call:
    780-250-9250 or
    I found myself praying for you and Hope as I was reading. Strength to you and prayers for that peace that passes all understanding. Heather

    1. Whoops. I got the reference wrong, it was Monica Van't Hoff who posted it!

  3. I'm just a mom who keeps reading your blog. I pray for you and your family all the time. I find my self thinking of Hope often and wondering how she is doing. Please know that so many people are praying for you!

  4. You are an amazing mommy Amy. Hope isn't the only one God is using in this situation. Your strength moves me in a profound way! We have so many praying, so thank you for continuing to have to take the time in keeping us inform. It is so great that you take the time to get away and be alone. My sister is in Calgary this weekend and heading back to Edmonton on Monday. If you need anything from here, let me know. I will send a meal up if that is okay. Thank you so much for the picture of Hope. We all Love it!!! Love you girl. Kelly

    1. Amy: Our hearts go out to you and Shawn during this difficult time. We are praying for you all and our church family joins us in praying for you as well. Stand firm. The Lord is faithful!
      Sharon from Indiana

  5. Amy,
    I've never met you, but I did go to Joy camp with your cousin Bethany. I saw her posts on face book about your story and have been following your blog. I just wanted to let you know that I am praying for your beautiful little Hope, and also for you, your husband and little girl Sadie. I pray that God would meet you all where you are, both physically and emotionally, and carry you through to the next steps he has for you. You are such an example of what it means to trust in His higher plan even though it seems so unclear at times. I pray that God would lay his hands of healing on Hope and that the medications would help to settle things.
    Sarah West From Cobourg Ontario