Tuesday 11 December 2012

Goodbye Oxygen!

Today I ran into Hope's hospital room in the midst of rounds.  Maria had spent the night, but I didn't want to miss rounds in the morning.  I confessed my oxygen tampering to the doctor and he laughed.  He had wondered how she'd come down and couldn't find anything in her chart.  He told me that I knew Hope well and could continue, as long as I kept them informed.  Just 7 hours later, I had Hope completely off oxygen and removed her uncomfortable nasal prongs.  Praise Jesus for this wonderful step in the right direction.  Now that Hope is off oxygen, especially blended oxygen, we should be able to take Hope out in the hallway for a walk sometime soon!

This afternoon the GI team came to meet with me after a meeting with the paediatric team.  I'm not sure why we hadn't gone back to this earlier as we have tried this once before with Hope.  They have decided to feed Hope through her NG (tube to her stomach) and an NJ (tube that goes past the stomach).  The NJ was inserted this afternoon and they began feeding her through it this evening.  Hope is receiving 15mls an hour through the NG and will have increasingly more feed put into the NJ as well.  This will help us achieve full feeds at a faster pace than Hope's stomach alone would allow.  Once we get off the liquid nutrients, we can get rid of the PICC line!

We still have a major issue here, the clot.  They have decided that there is no easy way around this and that no matter what we do, we are taking a risk.  Once the liquid nutrients (TPN) is no longer needed, they will wait 48 hours to be sure we're okay and then pull Hope's PICC line.  We are asking the world to pray that the clot at the end of the line will end up in the lungs or disappear before the line is pulled.  The lungs work as a filter and can keep the clot from going anywhere dangerous.  If it does not go through the lungs, it could end up in the brain and cause serious problems.  We need a miracle and we know that God is able and are asking Him to spare Hope once again.

I am trying not to get ahead of myself, but find it hard to control myself some times.  Now that Hope is off oxygen and we are closer to removing the PICC line...maybe there could be a chance of a day pass for a few hours on Christmas day??  I'll wait until she's more stable to bring it up in rounds, but I'm certainly thinking about it and hoping for this miracle.  Hope will need to be tolerating her feeds more for this to be possible...at this point that does not look too good, but I refuse to give up on her.

I used to love the movie 'Miracle on 34th St' and this year I am asking you all to join me in praying for a miracle in Hope's body.  Thank you for believing in a little girl with only half a heart.  She has the odds stacked against her, but God does not care about the odds and is capable of the impossible.

11 comments:

  1. I will keep praying for sweet Hope, you, and your family. I am believing for miracles.

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  2. So exciting - good for you for allowing yourself to hope! :) we will pray to that end as well... And that the clot will dissolve. Are they blasting her line with anticoagulants daily?

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  3. Praise God! Continuing to pray for you all:) God Bless

    Stacey

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  4. Praying for lots of love and for the miracle that Hope needs right now. I will continue to pray for your family and strength for you <3 I tried to join your site, but I am having some difficulties.., I will keep trying. God Bless all of you <3

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  5. We are praying for this miracle! We believe! We pray God's will be done. Hugs.

    Liz Gaasenbeek

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  6. Love reading all the good news. Perhaps the story might be 'Miracle on Hope Street'? The strength of world-wide prayer is simply amazing. I'll focus on the clot disappearing. Blowing hugs and kisses toward Calgary from Ontario.

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  7. Yay! I've been praying that Hope could be successfully weaned off of the oxygen. I'll be praying more fervently about her feeds and the clot now. Praying for a Christmas miracle for you all!

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  8. I have shared this entry on facebook in the hooe tha some of my friends will pray for a miracle. Our God is able. Xoxo

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  9. Hi Amy, I have been following your recent posts (and read back quite far as well) I have to say it has been very emotional. My name is Lynn Nakoneshny, I am one of the Heart Beats Mom's. Mom to Josh who is now 6 and was born with HLHS as well, we had our share of struggles, and we spent a Christmas in the Hospital as Josh had his Norwood Dec 19, 2006. I think of your family often and pray for Hope everyday. Hope is strong and she will prevail. You know her best - keep on advocating. God is Good and he will see your family through this. I hope to meet you all one of these days, Hope has truly touched so many lives. Take Care.

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  10. Way to Amy!
    Such positive news.
    Will continue to send much love and prayers to Hope and all of her amazing support crew.
    Kael

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