Just waiting here. Ammonia was 44 on Saturday morning so we are giving her a day off and not testing until 4am in the morning.
Jeremy’s mom and dad are here this weekend so I got to go sleep in a bed some more. The Ronald McDonald house is close to the hospital and it is so nice. If you have ever thought about donating to a charity, it really is a great one. We have met some amazing people with amazing stories as well.
Corey and Julie came to babysit yesterday while we went for lunch and some shopping. We got a bumbo seat to see if she would like to try to sit up some. She lays lots and I know that can not be great for the shape of her head and her neck strength. We tried it for a second and she looked so cute, it was pretty difficult with all the lines though. Prayers for the family in the room next to us. Their child is on end of life care and wasn’t suppose to make it through the night but is still with them today. i can’t imagine that type of waiting right now. It really makes you cherish every single day we have.
Jeremy comes back tomorrow and we can’t wait.
Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.
Be completely humble and gentle; be patient, bearing with one another in love.
Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.
Ammonia levels have pretty much stabled off!!!!! We are now testing every 12 hours and slowing bumping her proteins up.
Met with the living donor transplant team yesterday at Georgetown. Not all the test are back yet but looks positive for me to be a candidate. It was very much an information overload yesterday. We find out 100% on aug 7th.
Brandy and I are struggling with some of the information. The whole time we have thought of the living donor route as the backup plan. The surgeon informed us that it’s actually the safest for Ryman. We’ll know exactly what she’s getting, family history, and it can be done in the next room so the organ wouldn’t go on ice. Safest for her doesn’t mean safe for me. This is a major surgery and will have a recovery time of 6-12 weeks. Don’t get me wrong. If I can do it I AM IN. Just having 2 family members down at the same time doesn’t sound easy.
We still are at the top of the list so before the 7th we could have a liver. My prayer for the next 2 weeks is to be 100% confident in the decision. If I am not suppose to be a living donor I hope that door is closed, because if they say yes on the 7th I’ll want to schedule it ASAP! Why is not being in control so dang hard!
Ryman’s numbers are looking great! Today we made it to 1.2g/kg of protein! Her ammonia right after bumping up was 80, we expected the increase since we went up on protein. This evening it was 54!!
Every time the phone rings my heart stops and I think, is this it? Do we have a liver?
Jeremy had to run back to Nashville and then he has one weekend left before he takes some time off to be here in case we get the call and a liver is available. So his Aunt Cathy and cousin Annie drove all way from Florida to be here with us. They are amazing! They along with Aunt Nicole made some goodies for her. A really cute banner, some covers for her picc lines (she has several stylish ones) and today Aunt Cathy helped by sewing some buttons on a dress we cut so she could have an actual outfit on. She is one very loved, very spoiled little girl. She deserves it all!
Right now its just a waiting game. The transplant team widened the range if livers we could except for her to 0-10 years old and up to 30kg. It could be any moment. Please pray for the family and child that will give Ryman a second chance at life. It is such a hard thing to know that getting the call means someone else letting go. I hope that the family, out there somewhere, knows that we will not take one day with their child’s liver for granted. We will hug her ever day and tell her how important this organ is and how a family was generous enough to let their child provide a life for her. I hope we will get to communicate with them and let them be a part of Ryman’s story.
We love you already.
Dear God, you have provided for us through all this and we trust completely that the plan you have for Ryman is a great one. She is your child and we know you hold her close each day. She is proof that prayers are heard and miracles happen. We love you and are so grateful for your provision and blessings. With so much love, Amen.
Fun times, fun stuff and seriousness!
Ryman’s numbers were great today. At midnight it was 85, 6am was 56 and 4pm was 68. That was with a protein increase. The 10pm draw was 66! We found out today that if there is a liver match for Ryman it is hers. There are no 1A or other 1B’s ahead of her in this region!! Such great news. Now its just waiting for the call, which will be so exciting yet so bitter sweet. For us to get the call someone else will have left this earth. Such a hard thing to process. We are getting the final lab that the transplant team needs in the morning. A friend of Jeremy’s sent us a very large goody bag for the hospital. She spent lots if time in the hospital with a sibling so she loaded us up with so much stuff. All of the necessities that you need for a long hospital stay including the hard copy of Jesus Calling. I thought to myself, I wonder what April 26th said, since that was the day we found out that something was not right about Ryman’s behavior. This is what it read: ‘Welcome problems as perspective-lifters. My children tend to sleepwalk through their days until they bump into an obstacle that stymies them. If you encounter a problem with no immediate solution, your response to that situation will take you either up or down. You can lash out at the difficulty, resenting it and feeling sorry for yourself. This will take you down into a pit of self-pity. Alternatively, the problem can be a ladder, enabling you to climb up and see your life from My perspective. Viewed from above, the obstacle that frustrated you is only a light and momentary trouble. Once your perspective has been heightened, you can look away from the problem altogether. Turn toward Me, and see the Light of My Presence shining upon you.’
We just got settled into our new room on the floor. We were actually moved to a huge room but it was 90,000 degrees because the A/C wasn’t working properly so I had to ask to be moved. Ryman was so fussy, I think she is going to be like here dad and hate to be hot. Even I was hot in the room which says a lot, I am always freezing. We are now in room 709 which is only a few doors down from the room we stayed in last time. I even saw the nurse we had the night before we left sitting outside the room. I then knew this was the room we were suppose to be in. Funny how you get those feelings sometimes. As I type this Jeremy is on his way here!! I cannot wait to see him, I know he is just excited to see us from the countdown text he has been sending me. Ryman’s ammonia was 85 this morning so we went up to 1.1g of protein. At 3pm it was 101 so we went back down just a hair. They are going to recheck at 11pm. Praying that it goes down. It has just been floating around that area.
I also wanted to mention how blown away I have been by the people who have made offers to give part of their liver to Ryman. Even from people we have never met. If Jeremy isn’t a match I may be calling you so hope you really meant it :).
I love everyone and know that Ryman is going to have so many people in her life.
We are having a very slow road back to finding a happy ground.
We actually started with .5g (9ml per hour mix) of protein and 37ml of fluid. Ammonia came down to 66. Yesterday we increased to .8g (14ml per hour mix) and I am guessing we went up a hair (Ammonia went up to 94, 93) because its set to 15ml per hour and we went to 10ml on the fluids (Ammonia was 91). Still not doing Arginine. Doing a Cutrulline dose in the feeds. This morning it was 85.
I put together a road map of Ryman’s formula changes the last few weeks and our past week at Vanderbilt, as much as I could remember. I thought it might help us see the big picture. I emailed it to Dr. Litchter at midnight and she email back at 2:30am saying that such information is always helpful. Hoping it gives her a better understanding of what our next turn is.
In looking at it, to me it seems that when we upped protein on 6/27 to 1.7g/kg from 1.6g/kg that’s when her volume intake started to decrease. Maybe she was trying to tell us she didn’t need anymore? We then condensed the volume and she started actually taking in the full amount if protein. That’s when we presented with ammonia 221.
Dr. Litchter tried explaining it to me that when she maxed out at 1.65 g/kg here last time that is when she was growing the most so we could say that she would never be able to tolerate more protein per kg of body weight because that was the time when she would use the most protein to grow. The numbers show she is protein deficient but she will always be because she can’t tolerate as much as she actually needs.
Also, her picc line wasn’t central when we got here so we have a new groin one and the Ammonul and fluids started going through it at around 11pm last night.
I am not sure what the next step is. I think we may increase the protein again today but waiting for Dr. Litchter and the team to round.
God is good, he has made one strong little girl. She cried a little when they first stuck her to get the picc line in. Just numbed her skin and no sedation or pain meds. She feel asleep! Toughest girl I know.
I got to see Julie and Cory last night and have dinner with them. I had an amazing nurse, who told me she would have a tech come sit with her until she feel asleep. They brought a beautiful orchid that they made me leave at the desk until we move to a room. Can’t wait until Ryman can see it.
Jeremy gets here tonight! I cannot wait to see him!!!!
Ammonia was 84 at 12am and 66 at 6am!!! This is great but she is only in .8g of protein and she can’t live on that little. So now that the ammonia is lower we will try to increase protein today. They also need to put a picc line in today because they can’t draw from the size that we got at Vandy. Different hospital rules. The inky issue is they want to have her not eat for hours incase something goes wrong and they have to incubate her. Pretty sure the metabolic team will not go for that. So she may just get some meds to make her sleepy and do it without sedation. We did it with her wide awake and no drugs at Vandy. She is a tough girl. Good thing is that Children’s National is known for their great Picc team and being really good at central lines. Getting ready to join the doctors while they round on her. I update what the plan is when I know.
With high ammonia the sleep you get really isn’t good sleep. So now I know she is sleeping peacefully.