We are feeling pretty blessed right now. It has been a busy few days. I kept starting to update everyone and then the plan would change. So as of today this is where we are. Since the only culture to grow the bacteria last week was from Ryman’s PICC line they really wanted to not have that line in her. This morning had started with us thinking we were going to be discharged to go stay with Julie and Corey and finish two more weeks of the IV meds from there. However there had been some miscommunication about whether the bacteria had grown from the line or the peripheral stick. It was cleared up this morning that it was the draw from the line. This changed everything! So today was Ryman’s last day of the IV meds and they pulled her PICC line. The bacteria poses a bigger risk than not doing six weeks of the IV med. We feel confident in this decision as well since our infectious disease doctor at Vanderbilt had already said that he felt 4 weeks was sufficient but that 6 weeks wouldn’t hurt anything. Given that the histoplasmosis is not in her bowels and that she is clinically so much better, we are happy with this decision. We are slowly weaning her down off the hydrocortisone as well and started a new medication for the bacteria as a precaution. We will stay inpatient a few more days to make sure that the new oral medication, replacing the IV med, will not cause her prograf level to get too high. They will be able to do heel sticks for those labs. Once outpatient we can get labs at Childrens National if we need an actual stick. They originally wanted to do a scope but that is pending now. All this said we are unclear of how long they will want us to stay local. With the IV med the thought was 3 weeks, now that we aren’t doing that it may not be as long. We spent tonight watching Ryman’s first movie! Frozen, of course! She loved it and clapped at the end of let it go. We danced during the credits and really had such a great night. Feeling beyond blessed and so happy. I’m sure our room is filled with prayers for Ryman and for us because there is nothing but happiness here. Love you all!
Ryman is sound asleep in the clouds. Perfect time for a nap actually and the sound of the plane engine and bumpy sky makes for great sleepy sounds. I need this on her sound machine! Jeremy is flying up on Southwest since we bad too much stuff to fly with. We will probably get there about the same time. It’s kind of crazy that I’m looking forward to seeing our Georgetown doctors, our Children’s team and of course Julie, Corey and all our liver friends! I bet Penny will love to see Jeremy (Penny is Julie and Corey’s dog who absolutely hates Jeremy, it’s pretty communal). We talked with the doctors at Vanderbilt today and they really have done an amazing job. It’s just time for her transplant team to see her in person. We think that Dr. Yazigi actually wants to do a scope again to get to the bottom of this stomach distention. We will have to wait for the rotavirus symptoms to clear before doing so. We did find out that her colon biopsy was negative for histoplasmosis. Which is great but leaves the unanswered question of, what is actually causing the bowel issues? Praying for answers while we are here.
We have felt so much love and support and want to thank you all for everything! Fiends keeping the dogs for us, rushing medication to the hospital so we wouldn’t miss the flight (long story), finances, coffee, food, gifts, goody bags, cinnamon toast when I was sick because it was the only thing I wanted, rides to the hospital even when you know I have rotavirus and the list goes on and on! We truly are blessed beyond words. We love you all. I will update again tomorrow once we get settled in at Georgetown!
Now that I am off of airplane mode I’ll post this:
He is taking care of us.
I am taking care of you. Feel the warmth and security of being enveloped in My loving Presence. Every detail of your life is under My control. Moreover, everything fits into a pattern for good, to those who love Me and are called according to My design and purpose.
Because the world is in an abnormal, fallen condition, people tend to think that chance governs the universe. Events may seem to occur randomly,with little or no meaning. People who view the world this way have overlooked one basic fact: the limitations of human understanding. What you know of the world you inhabit is only the tip of the iceberg. Submerged beneath the surface of the visible world are mysteries too vast for you to comprehend. If you could only see how close I am to you and how constantly I work on your behalf, you would never again doubt that I am wonderfully caring for you. This is why you must live by faith, not by sight; trusting in My mysterious, majestic Presence.
We are assured and know that [God being a partner in their labor] all things work together and are [fitting into a plan] for good to and for those who love God and are called according to [His] design and purpose.
—Romans 8:28 amp
Then Job replied to the Lord: “I know that you can do all things; no plan of yours can be thwarted. You asked, ‘Who is this that obscures my counsel without knowledge?’ Surely I spoke of things I did not understand, things too wonderful for me to know.”
Cast all your anxiety on him because he cares for you.
—1 Peter 5:7
We live by faith, not by sight.
—2 Corinthians 5:7
It’s been a long couple days. I didn’t get a chance to update because I was vomiting yesterday. We are back in the hospital due to Ryman having some viral symptoms. I ended up having the virus yesterday and we found out this morning that she tested positive for Rotavirus. If you are not familiar with Rotavirus it’s probably because kids are vaccinated for it now and therefore you don’t see it as much. It’s one of those viruses that your body can build good antibodies for and each time you are infected you are usually less symptomatic. It was the one vaccine that was partially live before transplant so she couldn’t get it, boo. I did get it but only vomited twice and felt bad for the rest of tr day. Poor Ryman is going on day 5 of it. Her blood culture also grew a bacteria but it looks like it could be a contaminant. So we just redid blood cultures today to make sure. We are definitely going to georgetown but are having to wait on figuring out transport tomorrow. At this point Ryman has been sick for so long that it’s time for her transplant team to treat her in person. We owe them a trip anyway for her one year transplant follow up (which was in September). Of course she has to be fancy and try to get a private jet ride there again. We aren’t sure how long this stay will be. It could be 2 weeks or 6 weeks. It will all be based on how well she does. Big thanks to everyone for their prayers and support. We couldn’t do this without you guys. So much love!
Foot picture by Ryman :).
Today started with me thinking we would be inpatient for a bit longer but it ends with Rye sleeping peacefully in her crib and me cuddled up in bed with the pugs. During rounds this morning the team told me we would only check labs on Monday and Thursday. The main reason I hadn’t battled staying inpatient for the antibiotic was because we were checking labs every day. Which would be hard to do on the weekends if aren’t in the hospital. So after that news I decided I was set on operation get us home. Jeremy had initiated that before he left for this run but I hadn’t jumped on the wagon yet. I doubled checked with our liver doctor from DC and she said if I felt comfortable giving it at home to go for it. Since Ryman is more herself and eating great it just seems silly to stay and limit her activity and ability to get a good nights sleep. The negation is that we will go for labs in clinic on Monday and Thursday and get readmitted once we finish the IV antibiotic in order to switch to oral doses. We will have to do that inpatient to make sure her electrolytes are stable and that her prograf doesn’t absorb different with this new medication. It has been known to do that do we aren’t going to take any chances and do the switch inpatient to watch her closely. We will get a pump and the antibiotics delivered to the house tomorrow and nurse Brandy will be full force again. Our pharmacist, Tim, at Pharmacy Care is amazing and he is delivering all her other meds to the house tomorrow. If you want an amazing pharmacist then you should check them out. They are an independent pharmacy in Nolensville but they have couriers who deliver in crunches like this or they just mail it right to you. Tim has even stayed up late making Ryman’s meds and brought them to the house himself. They are so great!! This afternoon Georgetown called they have decided that due to Ryman’s infection being so severe that she will do 6 weeks of the IV antibiotics instead if the typical 2-4 weeks. We received her latest antigen level and compared to last weeks level it is about the same she clinically is better but the fungal infection is just taking lots of the antibiotic to treat. Given that and the scope results they want to make sure we have it under control before switching to the oral antibiotic. Which today was mentioned that she may stay on for life. Yes, LIFE!! That’s how crazy this infection is. It can reactivate, especially in someone immune suppressed. So as long as she is on prograf she may have to take this antibiotic. I’m guessing only time will tell and how well she responds to this 6 week treatment. Your continued prayers are so appreciated. We love you all so much and are so grateful and blessed to have such amazing people rooting for our girl and for us. Good night! Breaking out!
As of this morning we thought we might be going home on Friday but the pathology report from the scope wasn’t in our favor and it looks like we will be here for two more weeks. They believe the histo is also in her GI track but are sending the slides to georgetown for their opinion. The cultures will take a week or more to grow the fungus to verify that way so we will continue treating with the IV antibiotic for another two weeks. On a good note, Ryman is definitely feeling better! She was out roaming with her push toy today and trying to run over the nurses feet. Her personality is coming back and we have had way more happy Rye. Jeremy is determined to talk the doctors into letting us do this antibiotic from home and just come in for labs everyday but I’m not so sure they are going to go for it. The antibiotic is extremely hard on your kidneys and Ryman’s electrolytes have been all over the place. Her potassium has been the hardest to control. It has been too low so we have been giving her IV and oral doses. The problem is that too low is dangerous but two high is even more dangerous. So the ability to keep. close eye on it is the main factor in her staying in patient for the medication. But the most important thing is how Ryman is doing and currently she is on the mend. Thank you all for your continued prayers for Ryman and our family. It’s been a long hospital stay and its tough to hear that we may only be halfway there but I know that these doctors and this hospital is what have made her be able to laugh, play and feel so much better so it makes things a little bit easier. They really are a great group of people and we continue to be amazed at how great out nurses have been. Actually from day one at every hospital we have been at we have been blessed with so many new friendships and people who love and care for Ryman so well. So truly blessed for this.
We hope everyone had a blessed thanksgiving! We turned Ryman’s hospital crib into a Cracker Barrel buffet. It was perfect! Ryman will be having an upper and lower gastrointestinal endoscopy today. Not fun but definitely needed. She did end up having one blood transfusion on Wednesday night but her numbers have been good since then. They can measure the amount of histo in her urine and when we came in she was above the max detectable limit of 19. After starting the antibiotics she was down to 18 and last week it was 10.5. Hoping for a much lower number this week but moving in the right direction. We have definitely seen some improvement in her demeanor and more smiles then we have in a while. Her main issue now has been her stomach. Her intestines continue to fill with she until her stomach is so distended and hard that she is in pain. The only thing that helps is making her walk which is not pleasant since she screams in pain the entire time. We are praying that the scope gives us more answers as to what is causing this. It could be the histo, a good intolerance, celiacs or something else. They will do a biopsy during the scope to check for all of these things. Yesterday was her first day in a lactose free diet and her stomach didn’t balloon up. Could have just been a coincidence but this scope will tell us for sure.
Love you all and will keep you updated on how today goes.
There is no evidence of histoplasmosis in Ryman’s bone marrow so far!!! Some of the cultures take a while but hematology delivered it as good news! Not only is it not present but they saw tons if new red blood cells being made. So what ever was going on last week is straightening out! We are so so grateful for this news. So the plan as of now is to continue IV antibiotics and hopefully watch her get better! We did have a rough night and start to today. She is having digestion issues and an xray showed lots of air/inflammation in the bowels. If things do not clear up in the next few days they may do a scope to investigate if there is anything going on. She is eating great and was being a little silly and laughing tonight which makes us so happy. Thank you so much for the continued prayers!
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!
Ryman had her bone marrow biopsy and the lumbar puncture yesterday.
Her spinal fluid was clear and had no red or white blood cells so that is a good sign. We will not know about bone marrow for a couple days but might get a prelim report before then. They said they would be surprised of it wasn’t in her bone marrow so we expect to see it there. Otherwise we start looking for another reason she isn’t making new red blood cells. The MRI did have a few spots but not from the infection. They think its possibly from pre CPS1 stuff or fat that develops around nerves until age 2 but they do not have scans here to compare too. I think we did one at Georgetown so they are sending it to Dr. Yazigi to compare if so. But no infection there so for this treatment that is a really good thing. She got an NG tube yesterday to start extra food (Boost) just to catch up on nutrition. She and Jeremy hate the tube but I think its a good thing for now. Her albumin is low causing some fluid in her abdomen and lack of consistent nutrition (NPO for the past there days on and off) has added to her mobility issues so her stomach is so swollen. She has been really lethargic for days now and had me really worried. She seemed a little more responsive last night but is back to being weak and sleepy this morning. I pray that it’s just exhaustion from fighting the infection. Still no fevers so that is a good sign. We are probably looking at 4 weeks of IV antibiotic and 1 year of oral antibiotic therapeutic dose and then probably a couple years of a low dose antibiotic. Insane! But if that’s what will get her better than bring it on.
I am thankful today that Ryman is still here with me and that I get to be by her side each day. Sometimes its hard to be thankful when she is so sick but I know that it is a blessing to get each day with her regardless of the circumstances.
My devotional said “Thankfulness is not some sort of magic formula; it is the language of Love, which enables you to communicate intimately with Me. A thankful mind-set does not entail a denial of reality with its plethora of problems. Instead, it rejoices in Me, your Savior, in the midst of trials and tribulations. I am your refuge and strength, an ever-present and well-proved help in trouble.”
He definitely is a well-proved help in trouble. Teaching me daily to lean and trust.
Ryman is in Day 6 of the antibiotic treatment and hasn’t improved so they are doing some more test today just to make sure they aren’t missing anything. She was able to get a PICC line placed so we are thankful for that and hasn’t had to get anymore sticks. Well except the shot she has to get in her thigh every night. It’s a medication that helps boost your white blood count. She had a CT scan, X-ray and ultrasound yesterday. They all looked okay, the GI doctor said he saw a few areas of non specific stuff that they think is just from the infection and she has a small pocket of fluid in her abdomen so we will keep and eye on those. They even checked her ammonia yesterday because she was so malaise. It was completely normal. They will do some additional test tomorrow morning on her liver to make sure its doing its job. Today is going to be a big one though. She is scheduled for a brain and abdomen MRI, a bone marrow biopsy and a spinal tap at around 2 or 2:30 today. We would appreciate prayers that these go smoothly and that Ryman isn’t in too much pain after the procedure. Also for good results. Histoplasmosis can go to your bone marrow and can effect your central nervous system or cause brain lesions. So we want to rule those out. The scans will allow them to know if the infection has settled anywhere and they can focus on site treatment if it has. Thank you all for the love and the suppose during this rough time. We love you all!