No luck getting a vein today. Poor daddy had to hold her while they tried to get one. We ended up doing a finger stick to get the two most important ones and are going to try again on Thursday. If they still cannot get one we will talk about placing a PICC line or Broviac. The labs we did get were great. Some of her liver numbers normal, one was a little elevated but it is the one that usually takes the longest to level out. Her Prograf Level was really high so we are holding the doses for tonight and tomorrow morning. We will resume tomorrow night with a lower dose. Thank you for the prayers and hoping we are able to get some blood on Thursday and do not need a line!
Someone was mischievous at 4am and pulled out her NG tube. I mean, all the way out! She was crying so I got up to check on her and she had the entire thing balled up in her hand. It was a struggle to get the last two feeds completely in her but I really don’t want to have to put that thing back down her nose myself. I know Jeremy and I can do it if we have to but I am really hoping she decides that today is the day she is going to start eating everything we give her! Say a little prayer :).
Love, B & the Mischievous Ryman
The last 24 hours have seemed really really long. Ryman is doing great but she has 29 doses of medicine a day right now. Its a full time job for Jeremy and I to get her fed and get all those medications in her. She is loving being out of the hospital though, at least it seems that way. She is pretty content until we are trying to force her to eat. We end up pushing some down the NG but she is still taking the majority of her formula by mouth. We are trying a very expensive formula to see if she does better with it. Funny thing is that it will taste more like her metabolic formula so maybe she will like it. The team suggested we try it since high levels if Prograf can cause a dairy allergy. We shall see. I think it will mainly be us having patience and when she is ready she will eat.
I have to give a big thanks to our team at children’s national. Kristina and Erin spent their own time today helping us work on meds and a feeding schedule. They are amazing!
We have our first clinic visit on Monday so hoping we get in a routine by then.
Feeling lucky to be in a home atmosphere with our little girl and her getting some normal life activities. Bumbo seat, momma roo, outside time, car rides, BATHS!!
Hope everyone has a great weekend! Love you!
Ryman just got a parade when we walked out of the transplant unit. The nurses got her a cape and sign it. Super baby! In true Ryman style she pulled out her NG tube right before we walked out the door. They taught us how to put it back in just in case it happens at home too. That also bought her another X-ray to make sure it was in the right place. She is sound asleep in the car. We have to stop and get a few more meds and then to Julie and Corey’s. Say some prayers for us! Going to be a chore getting in the routine of giving her 16 different medicines! She will not be on all of these forever but is going to keep us busy for the next 6 months. I’m sure we can come up with a creative way to organize it all. We have our first clinic visit on Monday so praying that things are go smoothly! Love you all.
Today was a great one. Ryman ate really well today and if things go as expected (which doesn’t always happen with Ms. Ryman) she will be discharged tomorrow. We are pretty excited and of course a little scared to leave the hospital. It is so hard to just think that everything is okay but I am trying to lean on God and trust that this is the next step in our journey. The sooner we are discharged the sooner we get back to Nashville. We miss our home, our dogs and our friends & family so much. We have been so blessed while here to have family and friends visit and to have made new friends. However, getting back to our house with our dogs and the barely used nursery will be pretty amazing.
I can’t express enough how the prayers and support from everyone has made this road an easier one to travel. I was getting ready this morning and I had the thought of what our life would be like if Ryman had not been born with CPS-1. I pictured us at home and hanging out with all our friends and their kids, taking her to the store with us or out to eat. When I let my mind race I can picture so many what ifs and then I think of all we would have missed out on. Getting to spend so much time with each other, leaning on Christ so much, holding Jeremy so tight during those really long tough nights, growing so close with Julie and Corey, getting so much love and support from family/friends/people we have never even met, the friendships that have come from all the hospital stays, becoming so aware of how many families are out there that are traveling a very similar path and just the unbelievable blessings God has given us during the past 5 months. I wouldn’t change it. I know that sounds really crazy to say but it is hard to even imagine Ryman’s story being any different. Yes, it would have been amazing if Ryman didn’t need a liver transplant but I’m sure that even if she hadn’t our lives would be consumed with other trivial issues and so much that we would just take for granted. I would love to take the pain she has experienced away but I know that her story is touching people and it is shaping her to be the strong woman I know she is one day going to be. I am so proud of my little girl. She is a fighter. I keep seeing this quote from Shakespeare and it sums her up completely. “And though she be but little, she is fierce.” She is Ryman Ali Little and I get to be her mom!