Wednesday, 20 February 2013

Dangerous Hope

It's difficult to blog on the days that I know the entry is going to be long and difficult to communicate well.  Please be patient as I try my best to bring you all into the meeting and up to date.

There is still some debate on what to do next with Hope's feeds.  One team feels that Hope should have feeds introduced tomorrow.  It would be done slowly and she would remain on TPN until she is able to tolerate full feeds.  They plan to start her on a feed that she did not tolerate last time it was attempted.  Shawn and I have our doubts that this is going to be effective.  If a feed is started and the chylothorax returns, we have to start over again.  Hope will go back on TPN for 4 weeks and after that is completed, we'll try another feed.  Today we were told that if we were being pessimistic, but realistic, Hope could have another 3-4 months in the hospital.  This was difficult to hear and extremely hard to accept.  They plan to begin home TPN training with us, but this will take over 6 weeks and will take time to set up.  It would get us home faster though.

The other opinion is that Hope should be put onto breast milk as she comes off TPN.  Shawn and I feel that this is the better option.  I am out of breast milk and the joint opinion of the staff involved, is that the milk bank would not be an option.  After the breast milk is processed there, it would be missing some of the elements that Hope would need with her Chylothorax.  So, we are exploring the use of some of our friends' breast milk.  This is not an easy answer either and comes with a LOT of red tape.  With Hope's future likely including a heart transplant and breast milk carrying many infections from a mother, anyone that donated would have to be tested for anything dangerous to Hope and this could take weeks to complete.  As a result, it may not help us with our first attempt at introducing feeds.  This is all still being debated and will take time, as it changes every day and is difficult to keep up with.  I guess we'll find out tomorrow which option is going to be attempted first.

Hope will transition to the Complex Care team next week and will be followed by 2 Nurse Practitioners and a Pediatrician that do not change.  This will give her extremely consistent care and will help keep track of all her complexities.  Shawn and I feel strongly that this will make a positive impact in Hope's life.  We are truly thankful for this opportunity and were able to meet one of the NP's today and feel that we'll be in good hands.

Now here is the difficult part.  I feel as though someone has called us and told us that we've won a free cruise.  We've all gotten those calls and you know it's too good to be true.  We have been given some hope for our little Hope and are taking it with a grain of salt.  We know that hope can be a dangerous thing, but are finding it difficult not to be excited.

When Hope's varices were greatly improved in Edmonton, the doctors were surprised.  They did not make a huge deal of this and simply moved forward.  Today we were informed that this is actually a miracle and does not make any sense.  The varices should not have improved with only one treatment, it's just not possible and does not make any sense to them.  The doctors are stunned and have trouble believing this has happened.

When the liver specialist met with me in Calgary, he explained that in very rare cases,  the portal vein can improve.  In less than 1% of people with portal vein hypertension, the body will naturally rebuild the portal vein and the issues will completely resolve without any intervention.  We were told to not let ourselves think about it as it was nearly impossible.  Today, the doctors have suggested that there is a possibility that this is happening.  They are planning to do an ultrasound of Hope's liver to take a look and see what they can see.  It is difficult to get a good look at the liver, and we truly need prayer that this test would be clear and they would be able to see exactly what's happening in the portal vein.  If Hope is in the less than 1% that naturally correct the problem, it is truly a game changer.

If this has happened, Hope is not only a candidate for a heart transplant, but also a candidate for the Fontan.  She would be able to have the Fontan (her 3rd surgery) at age 3-4 as she is supposed to.  If this  is our reality, there is no denying that God has truly done a miracle in her liver.  Something we were told wasn't going to happen, may have happened.  We know that like us, you are all wanting to jump up and down and announce that Hope's liver is cured.  We don't recommend this stance just yet, as we need to confirm that this is really happening as we have no real evidence, other than the vast improvement in her varices.  It would explain, however, why the varices and ascites have improved, but we need to wait and find out if this is true before we go crazy!

Hope's long term plan is not possible to speculate on until we have an answer with the liver.  Please join us in praying for this miracle!  Can you imagine if this was true??  One of our most major issues would be behind us.  The liver surgery in Toronto would no longer be necessary.  Hope's chance at a future would be greatly improved and her next steps would be possible.  This kind of hope is dangerous in our roller coaster journey with Hope but we know, with God, all things are possible!

Please also join us in praying that by some complete miracle, Hope's body would tolerate her feeds.  If she actually tolerated her feeds and the Chyle did not return, Hope could be home in 2 weeks.  Most doctors feel that this is a pipe dream and never going to happen.  Today I'm feeling adventurous and choosing to live on the edge a little.  Can you imagine if we were home with Hope in 2 weeks?  Ahhh, the very thought of it is like a vacation from our current reality.  All we can do is continue to pray and ask for a miracle.  At the same time, we know that God has a plan that is greater than our plan and we will believe He is good no matter what.  Some days we don't understand why, but we believe in a God that loves us and has not promised that life would be all candy and rainbows.  Today, I really Hope God has plans for Hope to return home though!

21 comments:

  1. I Believe in Miracles!!! * jumping up and down on the inside...just a little for now* :) praying for this to be your needed miracle!! Thoughts and Prayers from Ontario

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  2. Praising God for what He has done in Hopes life so far. I'll continue praying for more miracles. He is able!

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  3. Have you thought to try to restart your milk production? It is possible with frequent pumping and drugs. Not to put something else on your plate, but an idea if you are looking for one.

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  4. Oh Amy... We will ask for all these things & more! Hoping with you!

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  5. I have followed your journey from a distance (through Melanna). Today I am reminded of the song by Don Moen,

    God will Make a Way

    God will make a way; Where there seems to be no way;
    He works in ways we cannot see; He will make a way for me.
    He will be my guide; Hold me closely to His side;
    With love and strength for each new day;
    He will make a way; He will make a way.

    By a roadway in the wilderness,He'll lead me;
    And rivers in the desert will I see;
    Heaven and Earth will fade but His Word will still remain; And He will do something new today.

    Oh, God will make a way; Where there seems to be no way; He works in ways we cannot see;He will make a way for me;
    He will be my guide; Hold me closely to His side;
    With love and strength for each new day;
    He will make a way, He will make a way.

    May God show Himself faithful to you when you have to step off the edge and look to Him for a floor to walk on or wings with which to fly.
    With each new 'edge' you encounter, remember, remember, the miracles He has provided along the way and give Him thanks, thereby expressing your trust in His next miracle.

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  6. Amy, praying and praying! God is awesome!
    I just wanted to put something out there, I used to be a doula in Calgary and i'm wondering if you would be interested in relactating?? It's very possible...let me know through Sheena if you want some contacts or advice.
    Lacy

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  7. http://m.youtube.com/watch?v=WXqb_rHTi8w&feature=youtu.be&a=&desktop_uri=%2Fwatch%3Fv%3DWXqb_rHTi8w%26feature%3Dyoutu.be%26a

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  8. Amy, last Sunday we sang this song at church and it made me think of you. I've been wanting to share it with you all week.

    He Giveth More Grace

    He giveth more grace as our burdens grow greater,
    He sendeth more strength as our labors increase;
    To added afflictions He addeth His mercy,
    To multiplied trials He multiplies peace.
    When we have exhausted our store of endurance,
    When our strength has failed ere the day is half done,
    When we reach the end of our hoarded resources
    Our Father’s full giving is only begun.
    Fear not that thy need shall exceed His provision,
    Our God ever yearns His resources to share;
    Lean hard on the arm everlasting, availing;
    The Father both thee and thy load will upbear.
    His love has no limits, His grace has no measure,
    His power no boundary known unto men;
    For out of His infinite riches in Jesus
    He giveth, and giveth, and giveth again.

    Praying for you and your family as you have asked!

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  9. praying and hoping with you... and praying that they get all the info they need re her liver, and for the feeds! hope is a beautiful thing, even when it feels dangerous. praying for great news this week! - Annie in toronto

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  10. I am happy that you sound a lot more relaxed today, Amy. :)

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  11. I will most certainly prayer that this miracle does evolve into a reality for Hope and her folks!

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  12. I think all of us following Hope's journey believe in 'miracles'. Why not? There certainly has been enough evidence of the effects congregated prayer can have on the healing process. Continuing to be HOPE-ful in Ontario.

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  13. Praying and trusting in God for miracles! Take care....Hugs

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  14. Thanks for taking the time to put together such a measured post. It really speaks to your consideration of others. We are continuing our prayers, and definitely praising God for the small (or Giant) steps!
    -Lyndsay and Dean

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  15. Oh Amy, we are praying for you all! I have a fair bit of personal experience (3 babies' worth) of relactating with Domperidone, and would be willing to share about the challenges and triumphs if interested. led2teach@hotmail.com God has been doing miraculous things in so many people's lives through your faithful testimony. Praying that you will continue to run this race of faith with endurance, and asking for more miracles for Hope.

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  16. Our God is able. We will continue to pray for Hope and for your family.

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  17. Amy, I would urge you to consider relactation. Contact Dr. Jack Newman in Toronto and he will help you. www.drjacknewman.com

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