Jeremy and I just had a giggle at today’s Jesus Calling devotional. Man does he know us!
Grow strong in your weakness.Some of My children I’ve gifted with abundant strength and stamina. Others, like you, have received the humble gift of frailty. Your fragility is not a punishment, nor does it indicate lack of faith. On the contrary, weak ones like you must live by faith, depending on Me to get you through the day. I am developing your ability to trust Me, to lean on Me, rather than on your understanding. Your natural preference is to plan out your day, knowing what will happen when. My preference is for you to depend on Me continually, trusting Me to guide you and strengthen you as needed. This is how you grow strong in your weakness.
Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”
Lean on, trust in, and be confident in the Lord with all your heart and mind and do not rely on your own insight or understanding.
—Proverbs 3:5 amp
Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Day 1 has been really good. Ryman’s sugar was high and is now a little low. They are doing such am amazing job monitoring her. Hard to believe that this time last night she was going into the O.R. and about to begin the surgery. She is so stinking strong! They started to wean her from the paralyzes medication today and she woke up, started moving around and even opened her eyes and made a sad pucker face. Broke my heart but so amazing to see her sweet eyes and see her squirming around. She is off of Ammonul and her last ammonia was in the 40’s. They gave her some more meds to make her comfortable since she is waking up.
I have talked about reading other mom’s blogs of children who have had transplants. I have been in contact with Katie whose daughter Luca had CPS1 and was also transplanted at Georgetown. We got to meet for the first time today. She came to drip of goodies and a new notebook for me to keep my medical mom notes in. She was so encouraging and Ryman is even in the same ICU room that Luca was in post transplant. Luca was transplanted almost 3 years ago. We loved getting to meet Katie today and get some advice for what to look for and what may be to come. Thank you Katie!
We are loving the nurses and doctors here but we really do miss our team. I know we will soon have relationships with the team here but it will be tough to beat those we have developed at Children’s. Miss you guys, of course Ryman gets a liver when some of you are in Barcelona. She has a tendency to do crazy things when people leave town.
Jeremy and I got to grab lunch today and we are having a nice dinner outside the hospital. We are so grateful that his parents and grandmother have the ability to leave work and come be here. It will really help make this long journey much easier. You guys are amazing, We know there are so many family and friends who want to be here with us and please know that we feel your prayers in your absence.
We will update with more news as the night/morning progresses.
Today is Ryman’s 129th day of life yet her 1st day with this new gift of life she has been given! I hope that someday we know the family and child that gave her the chance to really thrive. I know the God who did this and I know that he is good. It’s hard not to feel sad for the family but I know that they chose to give life to other children in the midst of their loss. What amazing parents. I truly believe that Ryman was meant to have their child’s liver. We don’t always understand why God would take one from this Earth but in this moment we know that he did so for many other children to live. I will make Ryman aware of what loss was experienced and cherish their child and morn as if it were my own. Yet I will not discount the blessing that they were able to give. What a selfless amazing thing to do. I do not know of a bigger blessing anyone could give to another human being, Life. Think of the life that could be saved if we were all so generous with opportunities that God gives us.
I can not even tell you how heavy my heart is for them but how much I do not want to miss the rejoicing of their child’s ultimate gifts. Somewhere in this country there are several other families rejoicing because this child could have allowed for a heart, lung, potentially 2 kidney transplants, and even more. How amazing to think that one child could have saved the life of multiple children yesterday. To be on this Earth for such a short amount of time, what a wonderful legacy they will leave and how many lives they have changed forever.
Update on Ryman:
We didn’t sleep at all and played mexican train all night. They brought is a cot to her room so Jeremy and I have been able to grab a little sleep. She looks so great. Just finished rounds and everything seems good. Goal is to come off Ammonul first today and then if ammonia is good she will come off lipids and if still good lower the D10. Goal is to be off ventilator tomorrow. Liver numbers are improving. Has metabolic acidosis but they do not seem concerned about the number. Sugar is high so upping the insulin dose. Clotting numbers are not so good so they are doing heparin bolus every few hours to stay ahead of it. Blood flow in all veins look good. So far so good, praying it continues to go smoothly. Love you all! -B
Ryman is back in her room. Ventilator is on all the lowest settings. Vitals look great. The next 12 hours will be trying to wean her from it as much as possible. sarLove you and thank you all so much for the encouragement and prayers!
God is leading her and has given us so much peace through this process. Ry and ECMO, the lamb given to her from the ECMO team at Vandy, has been a symbolic reminder along this whole journey.
Just got word that the surgeons are closing up. Everything seemed to go very seamless. Very little blood loss. First incision was at 11:30 making it about 5 hours. Docs said it was a perfect fit and liver is already functioning great.
They just took Ryman back! Should get updated sometime during the surgery with how its going. She was smiling and happy. Ammonia level was about the same as it was this morning. This is such a crazy feeling. Excitement, scared, worried, happy. Everything you can feel. BLESSED!
Cute pic from yesterday that I can’t resist posting!
Dad made it!
Liver is on route to us now. It has past all the test. Surgery scheduled for 9 tonight. Grabbing some dinner now.
Gonna use this as a running blog all day for people wanting to keep up
I’m on the 1:35 flight to DC and can’t wait to get there. I’ve truly never been this excited in my life. Here is what I think Brandy said.
Attending doc is flying to Texas to look at the liver. If he green lights it we’ll be a go. I’ve never loved Texas more. We will update as soon as more info is available. Gonna be a crazy 24 hours. Please continue to take a second to pray for the family that is having to go through such a terrible lose for us to receive this gift.