We’ll be home for Christmas!!!!!!!!!!
We have had a great weekend at Julie and Corey’s. Ironically they have been in Nashville on a previously planned trip. We are headed to Georgetown this morning for labs and a checkup with Dr. Yazigi. Hoping for a good report. Ryman has done great and has really enjoyed her time out of the hospital since she feels so much better. Her favorite thing may have been bath time. It had been weeks since she had a real bath. We like that she can have one as well, she was a stinker.
Please say a prayer for Sawyer this morning, he is in surgery getting his new liver! I’m so excited for this family to join us on the other side of transplant. Please pray for the family who lost their child and made the decision to give life to others.
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.