Tuesday, 29 January 2013

Chylorthorax :(

I'll need to be creative in order to fit the craziness that was today into one blog post!  I knew it was not a good sign to see the X-ray machine over Hope as we walked in.  The nurse said, "I'll explain in a minute."  She pulled me aside and explained that Hope was labouring to breath and that they were quite worried about her.  We were quickly told that her left lung showed a large amount of fluid and a small amount on the right as well.  Hope was having this problem in Calgary and the doctor tapped her left lung to remove the fluid a long time ago.  The fluid did not look like Chylothorax, but was sent away for testing.  With a great deal of Lasix, the fluid was removed and I never heard anything about the test results being noteworthy.  FAIL.  Apparently the results showed that it was Chylothorax then, but it was missed by the doctors and therefore never treated.

Chylothorax is a side effect of heart surgery.  It is apparently very rare, but not in my world.  I live with all heart families each day and tons of them have it!  It is essentially leakage from the thoracic duct into the lungs.  The fluid needs to be removed in order to make it easier for the patient to breath.  Knowing that this is a side effect of heart surgery, Hope has had this since November.  It helps explain why we've had such drama with her feeds.  The treatment of it requires a completely fat free diet.  Hope's current feed has a high level of fat in it, so she will no longer be able to have it.  She is being switched to a fat free feed that we have tried, and failed at using, once before.  PLEASE pray that her body miraculously accepts this feed if Hope has Chylothorax.  Although the doctors are 99% sure that she does, we are waiting for lab results from the fluid to be sure.

Around lunchtime, our miracle vet doctor came in to put an IV in Hope.  He was able to get one in her head, after shaving more of her hair off.  When I got back to the room, I often leave to avoid having my heart broken once again, I found some tape on her bed.  The tape was full of her hair!  I almost broke down knowing that it had been removed from her head and had worked as a waxing strip to tear her hair off with it.  This was obviously not intentional by the staff and explains why they decided to shave some of her head.  It still breaks my heart to have her hair shaved.

The head IV was essential because Hope's magnesium levels are dangerously low.  The oral magnesium they were giving her was giving her terrible diarrhea and not working.  This is incredibly dangerous for Hope, as low magnesium causes irregular heart rhythms and could easily take her life if not treated quickly.  She is already receiving magnesium boluses through the IV line and will continue to receive them every 6 hours until her level stabilizes.

After this drama was complete, Hope was taken for an ultrasound to see what access points were available for a PICC line.  We know that IV's are short lived with Hope and something more permanent was required.  When this was discussed at morning rounds, we were told that if they had to use her jugular vein in her neck, a clot would be deadly for Hope.  This is the only source of blood to Hope's brain currently.  The other side is already clotted off and this is truly our lifeline.  They thankfully found a potential vein a little further down on the right arm.  This is still incredibly dangerous if it clots, but we'd still have a slight chance of saving her.

At 2:30 Hope was brought down to be put to sleep and have a chest tube put in her left side.  This was to drain the fluid from her left lung and will be in for a few days at least.  They were also going to attempt to get the PICC line, but were unsure if they had enough OR time.  Hope was clearly not previously scheduled for these procedures.  Hope came past us 30 minutes later with her chest tube in, but they had not been able to attempt the PICC.  She was taken to recovery and I was sent back upstairs.  5 minutes later the anesthetist walked in and said, "Miracle of all miracles, an OR just opened up and we are taking Hope now to put her back to sleep and attempt the PICC line."  This was amazing news!

Already exhausted from the emotions of the day, my mom and I had not moved when 2 minutes later a nurse walked in.  We were told to run down to the radiology desk as I had not yet signed consent for this second procedure.  It was a bit disorganized but we eventually found the doctor and I was able to sign consent.  Then the waiting continued.  Thankfully this time I was not in ear shot of the OR.  The first time, I had to listen to Hope scream until the medications took over and she went to sleep.  It was a horrible form of torture, but I couldn't bear to get up.  I just wanted to know that she was no longer screaming and waited for what felt like eternity to hear her voice quiet.

At 4:30 we got word that Hope was back in recovery and doing well, the PICC had been a success!  We are praising God for this PICC line and also begging Him to not allow it to clot.  The doctors have been very honest today, Hope is up against a lot of hurdles.  We have much to overcome before she is truly stable, but the fight is not over until God brings her home.

The cardiologist came to see us around 6:00 to let us know that Hope will likely be having her heart surgery on Thursday, this Thursday.  If she could have gone home to gain weight, they would have preferred that.  Since it does not look possible at this point, we are going to move forward with the heart surgery.

I think the most difficult part of today, was hearing Sadie in the back of my head.  I had told her last night that Mommy and Hope would likely be coming home later this week.  She was so excited, she squealed and said, "baby Hope all better?"  It broke my heart to know that I wouldn't be able to come home, or bring her sister back to her house either.  Sadie is so longing to have us back together as a family and is getting better at expressing it as the days turn into months!

I'm exhausted, I have never felt like I needed a vacation more.  This journey is exhausting and my reserve energy is running low.  I'm so tired of getting excited, and shortly after being devastated by bad news and set backs.  I am truly hoping that this surgery makes a world of difference and that each day after, we are only waiting to heal before we can finally go home as a family.  We are still in need of your continued prayer.


  1. Praying Psalm 91 over you and Hope.

    Whoever dwells in the shelter of the Most High
    will rest in the shadow of the Almighty.
    I will say of the Lord, “He is my refuge and my fortress,my God, in whom I trust.”

    he will save you from the fowler’s snare
    and from the deadly pestilence.
    He will cover you with his feathers,
    and under his wings you will find refuge;
    his faithfulness will be your shield and rampart. You will not fear the terror of night,
    nor the arrow that flies by day,
    nor the pestilence that stalks in the darkness,
    nor the plague that destroys at midday.
    A thousand may fall at your side,
    ten thousand at your right hand,
    but it will not come near you.
    You will only observe with your eyes
    and see the punishment of the wicked.

    If you say, “The Lord is my refuge,”
    and you make the Most High your dwelling,
    no harm will overtake you,
    no disaster will come near your tent.
    For he will command his angels concerning you
    to guard you in all your ways;
    they will lift you up in their hands,
    so that you will not strike your foot against a stone.
    You will tread on the lion and the cobra;
    you will trample the great lion and the serpent.
    “Because he loves me,” says the Lord, “I will rescue him;I will protect him, for he acknowledges my name. He will call on me, and I will answer him;
    I will be with him in trouble,
    I will deliver him and honor him.
    With long life I will satisfy him
    and show him my salvation.”

  2. Amy - I just found your blog through a connection at CSC. I will be praying for you!!!! This is not an easy journey....
    Lisa R

  3. It is truly incredible to have my heart captured by a little girl I have never met. I pray all healing and restoration over this young girl's body, and for best possible outcomes.

    While there are so many words I would like to share to attempt to encourage you, I feel as though none are as powerful as these:

    God is completely faithful, and you can trust Him.

  4. Stay strong beautiful Hope. We're praying every day and night for continuous progress. I also pray that you endure no more pain during your journey and ultimately, recovery. I can't wait to see pictures of you with your family at home, safe and sound. Thoughts and prayers with you and your family. Stay positive.
    - Mark

  5. Prayed for you tonight as every night. To the psalm 91 prayer I say "amen". Blessing and peace to your family

  6. Praying for sweet Hope!

  7. I've paused over the keyboard trying to find words: but all I'll say is that we will not stop lifting you & your family to The Lord. I promise.

  8. Amy, I want to Thank you for allowing so many others to be a part of your and Hope's world. I find it truly amazing to read how so many others, like me who don't know your family personally are praying for your daughter and have fallen in love with your little girl! I just know that God is using this situation to bring others closer to Him, how else do you explain such compassion? Anyway little Hope is in my prayers every single day and strength for you and your family is what I also ask for. I am in awe of your strength and often ask myself if I could go through what you are if it was my baby who was in the hospital: the answer is not on my own. However God's strength is with you and He is holing your hand through this whole thing.

  9. Prayimg for you this morning from SickKids in Toronto. Glad for the PICC line and praying for progress, miracles and more miracles. May today be a better day. May you know His Peace in very real ways. I can only imagine your exhaustion. Jesus, Come.

  10. I weep as I write this for our beautiful Hope who has suffered so much and for incredible Amy who has endured more than any mother should have to. As I lift you up in prayer this morning asking "why Lord", these lyrics came to mind.
    "I was sure by now Lord you would have reached down and wiped our tears away. Stepped in and saved the day. But once again I will say Amen and it is still raining. As the thunder rolls I barely hear you whisper through the rain "I'm with you". And as your mercy falls I'll raise my hands and praise the God who gives and takes away. And I'll praise you in this storm and I will lift my hands. For you are who you are no matter where I am. And every tear I've cried you hold in your hand, you never left my side. And though my heart is torn I will praise you in this storm. I remember when I stumbled in the wind. You heard my cry and raised me up again. But my strength is almost gone, how can I carry on if I can't find you? I lift my eyes to the hills. Where does my help come from? My help comes from the Lord, the Maker of heaven and earth."
    So those of us privileged to pray for you will continue to lift our hearts to the Lord sincerely and prayerfully asking for a miracle for precious Hope. I most likely will never meet you in this life but I thank you for allowing me to pray for your beautiful family who have a permanent place in my heart.

    Kathy C.

  11. I am sitting here explaining to my children that Hope is going in for a new heart tomorrow. They are 7 and 5. All of us have been praying for months and will continue praying for miracles upon miracles. We are praying for baby Hope and her new heart. As well as the Lord strength in you and through you and your whole family...

  12. Not a day goes by that I don't think of you all and pray. LORD hear our prayers!

  13. Praying and praying and praying some more!

  14. I don't know what to say, except to say that we are praying constantly for you and your beautiful Hope.