150 hours

Well today DIDN’T go the way we planned it.  Woke up with a high ammonia level with 97.  This is due to the fact that they started bolus feeds.  Basically they are giving her all her food at once instead of a drip.  This is to see how the meds react.  They have not reacted well.  We now have an ammonia level of 360 + and are in surgery to have the cannula replaced and dialysis started.  Its very hard to not be crippled with fear right now. 

We did decided this morning that Children’s national hospital (Washington DC) and Georgetown Hospital are our next stop.  We will be moved there no later then monday morning.  This is where we will do treatments for the next few months until the liver transplant.  Dr. Summers is at Children’s National and is the number 1 guy in the country on medabolic disorders.  Georgetown has an amazing transplant team. It’s very hard to imagine uprooting our lives here in Nashville to travel and live 650 miles away.  We know that we will have the same support system no matter where we are but it’s going to add a ton of stress to this already crappy situation. 

I did have an amazing friend Cory Snider reach out to me 3 days ago before DC was even on the table.  He offered us a place to stay if we ended up in that neck of the woods.   Bet he didn’t thing that 3 days later I’d be talking about coming to stay for the next 6 months possibly. 

I try to remind myself that God keeps opening up doors before we even need them. 

We still don’t even know which exact part of the Urea cycle is messed up.  It’s most likely CPS1 but there is a tiny 1 in 100 million chance its in the nagg cycle.   There is a treatment if it’s in the nagg cycle that doctors can’t even explain.  They described it to us as winning the lottery, or a hail marry pass.  They are going to try this carbon glue treatment when they start the dialysis.  I truly am sitting here praying that God turns this 1 in a million to a 1 in a 100 million.  I can’t even explain how much Ryman has inspired me already and know that this story has a miraculous ending.  It has to. 

-Jeremy

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22 thoughts on “150 hours

  1. I’m enjoying all of your stories and photos. I really look forward to the day that you are past the medical updates and posting about a healthy baby hitting her milestones. Go Ryman!

  2. I continue to pray everyday. I love you guys and miss Ryman to the moon and back. Wish I could get down there before you guys leave, I would give anything to be there. This back surgery has me stuck in this house for atleast another week. The prayers will not stop. Thinking of you guys, love you.

  3. Praying right now. “Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus throughout all ages, world without end. Amen.” Ephesians 3:20,21

  4. Ryman is a darling baby and a little trouper! Know this can be very scary and hard, but your joy in your baby and in God’s love is inspiring to us all. Stay in the “now”, minute by minute. I pray for you three all day long, and know a lot of us are, at AMEC.

  5. Dearest Brandy and Jeremy~ We love you and are trusting our Lord and GOD of the UNIVERSE to make a way for Ryman Ali and you! His plans are always HUGE and He does HUGE AMAZING WORKS ~In and thru our lives, no matter how small a body we live in! EVEYTHING HE DOES is ETERNAL! Even more AMAZING~ HE LOVES and gives us the GIFT to LOVE as well! So ~ along with you, We TRUST HIM~JESUS~ and the POWER of HIS NAME~

    We Pray PEACE on this journey you have been trusted with and a KNOWING of the Awesomeness of WHO we SERVE.

    A way you might consider staying in DC~ http://rmhc.greaterdc.org/
    It is for parents and family of children in extended care.
    Ten dollars a night-Ronald McDonald House- 2 miles from the Children’s Hospital. A Wonderful place!
    You will be so LOVED there!
    Dinner is prepared for all who stay- it is a beautiful home setting.

    Andre and I are Loving you-Jermey ~Brandy and Ryman Ali~
    As we Trust our LORD together!

    Olevia & Andre Dantzler
    Signal Mtn. TN

  6. Brandy, I had no idea this was going on until about 20 minutes ago! I am praying for you, Jeremy and of course sweet Ryman! If you need anything let me know! Prayers will be sent out! Love to you all!

  7. Prayers are being lifted for Ryman all the way from Kansas. God is great and has his hand on all of you. Trust in him as He is the Divine Healer. Know that you can draw strength from Him and the people he has put in your paths.

  8. Prayers non stop from Arkansas!
    Keep thinking of the Chris tomlin lyrics
    Our God is greater, our God is stronger
    God You are higher than any other
    Our God is Healer, awesome and power
    Our God, Our God…
    And if Our God is for us, then who could ever stop us
    And if our God is with us, then what can stand against?

  9. Even though we have never met, Tammy Vessel sent out a prayer request in our homeschool group in Alabama for Ryman. I pray that God will gently lift her up and hold Ryman in His Hands and she will feel His power and healing. I pray for both of you that God will give you strength, good health and peace that only He can give during this time. I pray that God will direct each doctor and nurse while treating Ryman. Once you get to DC, I would love to send a card (if you could provide an address)

  10. I continue to read every post to keep up. I wish I could be there more. I will continue to pray and be here for you guys as much as possible. Scott made a good point when he said that Ryman was brought here for a reason. There is no doubt in either of our minds that she will make it through this 100%. I hate that you all will be far away but we are here for whatever you guys need! We love you both a lot and will be waiting for all 3 of you to come home and celebrate the life of that precious little girl 🙂 keep us posted! We love you!

  11. You guys don’t know me, however i’m a friend of the Steiger Family. I’ve been praying for both of you, and sweet Ryman ever since i saw Brittany’s initial post. ❤ Much love from Yorba Linda, California being sent your way… We're praying for you in the Kazarian Household and also in the 8th grade girls small group at Rose Drive Friends Church. ❤

  12. Jeremy,
    My name is Lindsey Appiah. I am not sure if you remember me (I was the African American girl on the CP worship team). I live in D.C. (lived here for 6 years before Nashville and now for almost a year). I belong to an amazing church here, a really great community, and have friends who work at Children’s. I say this in all sincerity, if there is ANYTHING I can do to help, please contact me (lappiah@hotmail.com).

  13. WHEN I WOKE UP THIS MORNING AND SAW THIS I THAN GOT MY THOUGHTS AND SELF TOGETHER AND CALLED OUT TO ALL CHRISTIANS FOR PRAYER,I WILL BE SPREADING THE WORD TO MANY.WE ALL ARE SENDING OUR LOVE AND PRAYERS. MOM SAID TO LET YOU ALL KNOW SHE IS SENDING MAJOR PRAYERS AND LOVE AND CALL HER PLEASE IF YOU NEED SOMEONE TO JUST LISTEN…(270)737-4106..
    LOVE,
    GENNY &PAUL
    GENNYLEE & FAMILY
    CHASTITY & FAMILY

  14. Dr. Summar is the greatest metabolic doctor that you could have been blessed with. He was Lizzie’s doctor when he was at Vanderbilt. You couldn’t be in better hands. Praying for you all!

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