Wednesday 28 November 2012

A complete 180

Today was almost a shock.  There was no doubt as we sat in that meeting that MANY people had been praying.  The geniuses came together and started to talk things out before we were invited to join them. They began sharing about the issues we were facing and addressed them one at a time.  Everything was organized and well thought out.  It was so informative and we were blessed to have the opportunity to sit down with so many people involved in Hope's care at once.

The clot on the end of Hope's PICC line is a problem.  We need to up her blood thinner in order to treat this.  They don't feel comfortable upping the blood thinner until they know where the bleed came from. GI did not realize that Hope had had an MRV in Edmonton and had been diagnosed with portal vein hypertension.  They knew she had a clot in the portal vein but did not know that hypertension was a for sure thing.  After hearing this, they were very firm on the fact that she needed this scope.  If she does have varices, they need to be treated or they will bleed again for sure.

Cardiology weighed in on the fact that they felt Hope's risk of needing ECMO (heart/lung machine or life support) was low.  They were open to her having the surgery and felt confident that she could have it in Calgary.  So....Anesthesia, after hearing these facts, felt more comfortable taking the risk and doing the procedure.  It helps to hear all the different specialists discuss the importance of the procedure.  They have asked that the ECMO machine be in the room during the procedure.  This will make it possible to get Hope connected quickly if necessary.  The surgeon is going to be on call if she needs him as well.

Hope is scheduled to enter the OR tomorrow morning at 10 am.  In some ways, it's nice to have it happen quickly as it gives us less time to worry.  Please pray for us tomorrow as we sit and endure that long wait once again.  Hope is much stronger this week and will be in a more stable position going in.  It's probably better that they didn't take her last week.

Hope's last blood cultures showed that the infection is isolated to the line.  That means that the only way to get rid of it, is to pull the line.  It also means that as long as she's on the antibiotics, it shouldn't spread.  This is good news for us in a few ways.  This will lower the time frame that she needs to be on the antibiotics.  It may also mean that she can come off the antibiotics as soon as they pull the line.  We're not ready to do that now, but  we should be able to pull the line in the next few weeks if the clot dissolves.

We then discussed Hope's probability of having her 3rd surgery.  I let them know that we were frustrated with the conflict of information.  In Edmonton, we were told that Hope could have the surgery, but she wouldn't be able to have it until she was older.  It would be difficult to get her to that point, but possible.  Since returning, everything was being spoken of as though the Fontan were impossible.  The cardiologist shared that Edmonton had not passed that information on.  They are going to write a note in Hope's file to be sure she is no longer looked upon as purely palliative.  The intensivist apologized for the negativity that had been surrounding Hope and promised to talk with the other ICU staff.

After a long discussion, the team agrees that there is some hope that Hope could survive.  The odds are stacked against her, but it's not impossible.  They are now saying that although Hope is not currently a candidate for the Fontan, it does not mean that she will never be a candidate.  That is all we needed to hear to hold onto the hope that we may watch our little girl grow up.

Hope is now completely off sedatives and only on a low dose of narcotics.  She will need to stay on those for a few days post operatively, but should be able to rely on only Tylenol soon.  Hope is now on 5 mls an hour of feed.  A huge jump for Hope, but she appears to be doing well with it.  Hope will remain in the PICU at this point, but will likely go to the ward on the weekend or early next week.  

We covet your prayers as we hand over our little girl once again tomorrow, it's never easy.  Please pray that they can find some conclusive answers for the bleed to avoid it happening again.  We are praising God for such a positive meeting that has changed the attitudes of many doctors involved in Hope's care.  If the doctors believe she can live, they'll work harder to make that happen.  Tonight we feel nervous about tomorrow, but encouraged about the future.  With God, all things are possible.

28 comments:

  1. Hey Amy,
    Best of luck for the surgery. I know baby Hope will make it through and tomorrow night when I read your post there will be something to be happy about again.
    Love and prayers for all of you and specially baby Hope.

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  2. Thank you Lord! Praying that all goes well for you in the morning and that you will sleep well tonight once again trusting in the steadfast love of the One who loves Hope even more than you do.
    God bless you Amy & Shawn!

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  3. Amazing, just amazing! Our God is a great physician. We went to the prayer time for Hope @ Compass Point last Thursday. The update the next day was less than good. We will continue to pray for all involved in the procedure tomorrow. Sleep well knowing that the Great Physician will take care of your little one. God bless you. Pam & Ross Langford

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  4. I continue to pray Amy! My spare thoughts think about Hope often, and I pray for healing, health, peace, and happiness for your little baby and your family. She is a strong little warrior, and she is truly a shining example of God's ability and love. I have absolute faith that Hope is going to grow, and become stronger, and be able to have the third surgery. I pray for many many years with her. I will be praying for you all during her surgery, and that they can determine what is wrong and be able to work towards fixing it. Much love!

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  5. This update made me cry and I have never even met you... I will be thinking of you tomorrow and sending every good thought I have to you as Hope enters surgery and all day in hopes it goes well and you get some answers... I am so sorry that you are going through this... and your family is always on my mind...hoping for the best! Hope sounds like such a strong little one and I am confident she can do this..especially with such love and support!

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  6. amazing news! praying for you all tomorrow as she goes in. May the Lord direct the doctors' and nurses' every move in that OR. And may you have peace... seriously, so happy about today. what a huge answer to prayer!!!!

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  7. Our family will continue to pray for yours, especially tomorrow morning at 10 am and during the surgery. Alanna, Chris and baby Abigail

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  8. Awesome news! What an amazing meeting. Praying for you tomorrow.

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  9. WOW. what a great meeting, God has made a way for Hope. I will keep fervently praying for more of this tomorrow. As always your faith and love is inspiring.

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  10. Such good news!!! Continuing to pray (although I have never met you either). God bless you overwhelmingly. Thanks for sharing your and Hope's story.

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  11. Praise God for the positive turnaround from her care givers. I have goosebumps. I will continue to pray. Your little girl is a testimony to God's greatness. Love to you all x Cath

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  12. Wow!!! Halleluyah to Christ our King!!! He knows the plans he has for Hope! Not of utter destruction but a confident future! Amen!

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  13. Praying for you all and it's encouraging that you got some positive news. Here's hoping and praying that all goes well with the surgery and beyond.

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  14. Yes!!! So happy to hear this!

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  15. I am praying for you and your husband and Hope. <3

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  16. Hope will be in my prayers again tonight... and again in the morning. I think of her often and also with much 'hope' for her future and life ahead. I cry tears of joy with you at this seemingly-optimistic update from the doctors and hold tightly to the fact that miracles do happen. I do pray that your daughter gets to be one of those miracles and gets to grow up and live a long, healthy life.

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  17. I pray right now that God will bring you a miracle with your little girl, that God will get all the glory and he will put the right people in the right place at the right time. God is in control, God bless you and strengthen you all.

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  18. So many are on the side of positivity on Hope's behalf. At 10 am today (Calgary time), you can be sure I will be sending all the healing energy I can from here in Ontario. While the meeting with the 'geniuses' must have been frightening, it had encouragement embedded in it. Thoughts and prayers continue.

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  19. We join you in your new optimism as we joined in your grief. My family has been praying incessantly for your sweet girl and will continue to do so. We are spreading Hope's story and asking for more prayers. We pray for her complete healing but also for the doctors charged with her care, that they are able to find solutions through God's Almighty Inspiration. We pray for strength for you, Amy and Shawn and for precious Sadie.

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  20. You are always in my prayers.. take care and keep smiling

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  21. Praying that God fully takes over the mind and hands of the surgeons that work on Hope today! Hope will be in the best hands!

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  22. Continuing to pray for your whole family, and especially little hope.

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  23. Trusting God with our plea for little Hope's life to glorify Him & that He will give you all strength for the journey.

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  24. Hello Amy,

    I have been following your story and praying for you all each day. I am so thankful that Hope has been having some much needed restful days, and I was so so thankful to hear that the doctors are more on board with treating Hope like she has a chance. I will continue to pray that the Lord will glorify His name and that He would do so in her healing. Praying for the rest of you lovely family as well,

    Sarah (Peterborough, On)

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  25. Praying for Hope and your family. May God infuse each of you especially Hope, the doctors, the teams, with His energy, with His guidance, with His healing..complete healing of Hope's heart! God bless you all.

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  26. Praising our Lord and giving thanks for all He has done and for all He will do. Continued prayer for tomorrow; may He provide healing for Hope, wisdom and expertise to the Dr's and all the medical staff, and peace that surpasses all understanding for you and Shawn.

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