Not only are we on hospital time but we are on hospital holiday week time. Things move slow in a hospital setting when you are just hanging out and getting antibiotics. Its a good thing though, things are calm today. Ryman got to stop the Nupragen shots the night before last and she actually walked a little bit yesterday. They think she was having some bone pain. So no bone scan for the time being. We still haven’t heard anything from the biopsy and spinal tap. Hopefully some news tomorrow. We did have some really good labs this morning that showed Ryman making lots of reticulocytes, which are immature red blood cells. So she is making blood again! Such a good sign. Hopefully no more transfusions will be needed. The feeding tube and nutrition seems to be helping move things along. We did find out that the granulomas they found in the liver biopsy that are due to histoplasmosis were present in the biopsy from July as well. She just wasn’t having any of the symptoms to think anything of it since rejection was present. We then immune suppressed her like crazy due to the rejection which gave way for the fungal infection to flourish. The doctors said it is a really slow progressing infection so she has probably had it for a long time. We also found out that Ryman will remain on just a detectable amount of immune suppression medication for as long as possible. It could be 6 months, 1 year or forever. This is great for her being able to not get sick as much but bad for her if her immune system decided to fight her liver. So we are praying that we will be able to balance the histoplasmosis medication and the immune suppression enough to not reject the liver but be able to fight the infection. She will be on oral antibiotics when we go home and will remain on them for 1 year or more. I feel like Ryman is improving but it will be a slow process. At least seven more days of IV antibiotics inpatient is the plan as of now.
I also just want to say that the support and prayers are so appreciated. The coffee, food, balloons, stuffed animals, toys, humidifier, magazines, house work and company are more than we could ask for. We are so thankful tonight for the friends and family we have. The prayers and love are simply something we will never be able to express the power of through words. You all make this journey one that we can travel in joy regardless of the circumstances. I was reminded today of how close we truly were to loosing Ryman last year. Yet during the storm, Jeremy and I never felt the burden. You all carried that for us, there is really no other way to explain it. One of our liver family’s lost their little girl today. She also had CPS-1 and was a little over a year old. I sat today and wondered why these babies have to go so young. Why do others go and some stay. Some go and save others in doing so. It all seems so crazy to me. We live in a fallen wold and I know we will never understand the whys of death. Proverbs 16:9 says,” In heart a man plans his course, but The Lord determines his steps.” We have no control of how many steps we will have. I have thought a lot lately about the saying, live each day as if it were your last. How amazing would the world be if we actually did that. I’m not sure if that is even possible for the human race. We have so many distractions that stand in our way. To wake up and know, this is my last day to be here with my family and friends. How different I would live that day. But our minds and our ability to live life in the present makes that so hard. I would spend way less time on my phone and more time playing with Ryman and expressing my love to Jeremy. Yet as I think about it I almost want to cry, would I just sit and hold them both all day? I think its hard with life full of material things to stop and remember that we only need him. Things really are that simple yet we live in such a time that it is so hard to keep focus on that.
Even if you can’t live the entire day as if it were your last, then let’s try to live at least one situation or moment as so. Even if its just telling someone how much you appreciate them and love them. Love you all, Vital check time so I’m going to go give Ryman a big hug and kiss!
I’ll leave you with some of those moments captured by an amazing photographer a couple months ago. I’ll have to share her story later. Thank you Tara Day for these reminders of how we should spend each day. Joyful!