165 hours

Induction day – Brandy

If things would have gone as we had planned I would be an hour into the induction process right now. Instead I am trying to process the fact that we are going to be picking up and pretty much moving to DC for the next few months. Really hard to get a grasp on that right now.
Yesterday morning we had to make a decision on which hospital would be doing the transplant, Pittsburgh or DC. We were really pretty sure we wanted to do Pittsburgh. They do more liver transplants than anyone else and have the best numbers. But after talking to several doctors and looking at the numbers at DC, we realized that even though they don’t do as many as Pittsburgh a large majority of the ones they do are on babies. Another thing that played a big part input decision was that DR. Summars, who is the guy for this type of disorder, is at DC National and since we are going to possibly be at a hospital for a bit before the transplant her pre-care will be much better at DC. We hadn’t originally taken that into account and it plays a huge role in keeping her stable until the transplant happens. Dr. Marshall is the best person in the entire world to care for Ryman right now. Even her current doctors say this. He has already been consulting with her team of doctors this entire time and they say the team has really rallied together to get everyone on the same page for when she arrives in DC (on her private jet of course).
As Jeremy mentioned we have friends there so that’s a big plus too. All signs pointed to DC. So we wrote it on the form and signed.
Last night I received a Facebook message and a call from one of our fellow crosspoint family. I had met Shannon at the Bellevue campus before and Jeremy played with her on the music team several times. She is friends with Dr. Summars wife, see Dr. Summars and his wife Karen use to live in Nashville and both worked at Vanderbilt before they moved hospitals. Shannon had messaged Karen and let her know we were headed that way. Karen told her to give me her cell phone number. So today I will be calling and talking with the wife of THE best urea cycle disorder doctor in the world. Yep, I see you GOD. Not letting doubt you for long :).
Latest update:
Last ammonia level we got was from 2am and it was 69. This is great. Anything below 70 is the goal. 30’s and 40’s is ideal but we will take 69. The 6am labs aren’t back but I’m praying its lower. The nurse said she hadn’t pee’d since midnight so they were talking about putting a catheter back in. While talking about it she started peeing… Haha.. It only took threatening her with that :). The nurse said she is very stable and they think she is feeling much better.
Yesterday was a rough day so I pray that today we see a little more light.
He is always there even in the darkness to take our hand and lead us into the light.

Love you all and are so grateful to have your support, love and prayers.

20130503-080148.jpg

Hope this happens again soon, eyes open.

20130503-080211.jpg

Advertisements

10 thoughts on “165 hours

  1. I follow your posts throughout each day. Y’all do not leave my heart and prayers. I know you’ve got plenty of support, but if there is anything I can do to help let me know. Dinner? A store run? Doggie care? Nothing is too small.
    615-618-5469
    Brandy

    In the mean time, I’m praying incessantly!

  2. I think about Baby Ryman and you all throughout the day and I’m continuing to pray. Keep faith in God and he will see you through. I really wish that there was something that we could do, but I know that the biggest thing you all need right now is prayers. Please stay strong. iI you need someone to talk to please call. Love, Brandi

  3. It sounds like Miss Ryman will have an awesome team in DC! You, Jeremy and God have made an amazing and strong little girl. If there’s anything we can do to help your family get ready for the move please don’t hesitate to ask!

  4. the little cutie pie…she hears you ..your voices are a source of comfort and strength for her. YES GOD is in charge…he’s definitely showing you the right doors to open..and then when you open them its better then you thought. Ive fallen in love with your little “nugget”. I am so fortunate to watch as her miracles unfold…what a blessing you two are to her!! Love and Prayers Jo

  5. Reid and I talk about Ryman every day and pray for her every night. We love you guys! The Lord has gone before you and will direct your steps. Reid is excited about taking Ryman on a ‘date’ one day 🙂

  6. We are praying for Baby Ryman back here in Morgantown, Kentucky. I love how you continue to trust God’s plan and provision. I am in awe of the doors He is continuing to open for you guys in order for Ryman to receive the best care possible. Only He can do that. We will continue to cover you in prayer<3

  7. Brandy and Jeremy, Thank you both for all of your beautiful updates. I love seeing all the “God-incedences” that are happening for baby Ryman! Much love sent your way and many prayers to our Almighty God! Ruth Warren

  8. We are praying for you 3 daily!! Ben, Laura & Katie Byars

    Psalm 20

    1 May the Lord answer you when you are in distress;
    may the name of the God of Jacob protect you.
    2 May he send you help from the sanctuary
    and grant you support from Zion.
    3 May he remember all your sacrifices
    and accept your burnt offerings.[b]
    4 May he give you the desire of your heart
    and make all your plans succeed.
    5 May we shout for joy over your victory
    and lift up our banners in the name of our God.

    May the Lord grant all your requests.

    6 Now this I know:
    The Lord gives victory to his anointed.
    He answers him from his heavenly sanctuary
    with the victorious power of his right hand.
    7 Some trust in chariots and some in horses,
    but we trust in the name of the Lord our God.
    8 They are brought to their knees and fall,
    but we rise up and stand firm.
    9 Lord, give victory to the king!
    Answer us when we call!

    1. We follow your daily posts. She is such a beautiful baby. I pray several times a day that God keeps his cloak around all of you. As you know we have a lot of guardian angels in heaven looking down and protecting her. I know she will come through this and that God has a lot of plans for this special little one. We love you all. Sue and Darrell.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s