Day 149

We found out this evening that the surgery went better than we expected. We had originally been told that the recovery from this surgery was going to be much more difficult since connecting to the aorta would involve moving some bowels around. Anytime you touch the bowels you cause some issues with them being able to wake back up or function to their full potential. It can cause some digestion issues for a couple days until they work themselves out. So after transplant they tend to wait until post op day 3-5 before attempting any kind of feeds. Dr. Fishbein stopped by today and explained that during the surgery he was actually able to connect to the aorta from above (usually its below) and did not have to touch the bowels this time. That being said they should be healed from the first transplant and we should be able to start offering some feeds after she comes off the ventilator and wakes up enough. The plan right now is to ween her off the paralyzes medications tonight and off the ventilator tomorrow morning. She is one strong little girl though and has been fighting her sedation all day. They keep trying to get her to sleep and she is fighting it so hard.
We are feeling very blessed with where we are tonight. I got to spend some time with Katie, Ian, Katie’s mother and Luca today. If you remember, Luca also has CPS-1 and was transplanted around the same age as Ryman. She has been here for an overnight procedure. It’s been great getting to know them and to have someone who has been here to talk too. We got told today that Ryman would need the dreaded Lovenox shots for a minimum of one year, twice a day. Luca had to have them for quite sometime too and seeing her smile and explore the unit is such encouragement for knowing that sticking our daughter with a needle twice a day will not be easy but is totally doable. Luca received part of her dad’s liver and has had some complications with bile ducts over the years. I am almost positive that their experience is what helped in making the decision to list Ryman as a 1A and just get a new liver in her. I would love for you guys to add Luca and her family to your prayers. They have had a rough road to travel but have been such am inspiration to me. When I was very afraid of transplant and of what the future would hold, Katie reached out and really put my heart at ease about it. You can read about Luca’s story at
http://m.caringbridge.org/visit/lucamariethomas .
Her first few months are so similar to Rye’s that it gave me chills the very first time I read it.

On a side note you might have noticed that whenever I write I use the nickname Ry and Jeremy uses Rye. After much debate between the two of us I surrender and officially let it be known that Jeremy’s spelling wins!
Rye it is:

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Much Love, B

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8 thoughts on “Day 149

  1. My heart is with you, Jer and Rye. It’s so good to hear a positive update and to know that our little fighter is throwing punches even in induced sleep. Can you imagine what a handfull she’s gonna be when she doesn’t want to go to bed in a few years, lol I am sure you will treasure her tantrums and thank God that she is here to try your nerves!
    Let Luca’s mother know there are daily prayers for her little one, for her and for all involved in their care. What a gift to have someone who has been rite where you are. To hear encouragement and see results.
    I’ve also been wondering about the child who received the last liver that was to big for Rye? Have prayed nightly for that family and hope they are seeing a miracle!
    Love and Prayers from Ky

  2. So glad to hear that Ryman is still her strong little self and doing so well! A lot of us at AMEC are checking daily and praying. Brandy–isn’t there a numbing thing called the Buzzy Bee that you could use when giving her the Lovenox? I would think the pediatric folks would know about it.

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