This week has been as crazy as last week. We had labs on Tuesday and the good news is that Ryman’s liver function numbers are still improving. Her Alkaline phosphate however is so high that it maxed out what the test could actually detect. It just says >4,555, she usually runs around 200 so that’s way high. On Thursday we repeated labs and had another stool sample to check for more viruses using the high tech DNA method. We were thinking it had to be something viral since Nicole and Patti got sick after visiting that weekend. Her GGT actually came down on Thursday which is the first time that has happened since this all began. We aren’t sure if her Alkaline Phosphate went up or down since it still just reads as >4,555. Thursday I started to wonder if Ryman might be having a dairy allergy again since we have been battling diarrhea off an on for a month and her past formula allergy. I hadn’t given Ryman any nuts yet so I put a little peanut butter on her cheek and her arm. After 40 mins nothing had happened, no red patch or itching. I know that almonds are tree nuts are different from peanuts but I was thinking there would be more of an allergy to peanuts than almonds. Maybe I was wrong. No one in our families have had any major food allergies so I told myself to stop being paranoid and just give her a little. I gave her a tiny bit of almond milk and she hated it. So I had soy milk in the fridge and since she was on soy formula I thought she may actually like it. She only had a couple sips of it. That was at 6pm. At around 9pm I started to think to myself that the steroids were ready making Ryman so puffy, boy she is going to get chunky again. Then Ryman started to rub her eyes like crazy. I thought she was tired since she hadn’t taken her evening nap. But then I took a step back and looked at her, one of her eyelids was swollen! Let the panic begin. I of course had no children’s Benydryl so after franticly calling friends to ask what I should do I realized Walgreens would be the fastest way to get some. Go ahead and add that to your next grocery list! The pharmacist gave her a teaspoon and we headed straight to the ER. I didn’t even have my wallet to pay so they said I could come back and pay that next day. I don’t think I was that panicked when Ryman’s ammonia was high, mainly because I had just read an article about a 13 year old girl who died from a nut allergy after one bite of a rice crispy treat that had been made with or near nuts. The thought even crossed my mind, she survived two liver transplants and she is going to die from an allergy! I told you I was panicking. We were held in the ER until 5am so they could make sure her symptoms didn’t come back. Laura and Melissa came to keep me company since Jeremy was out of town. Miranda let the dogs out and even washed my dishes, again proving that we are so blessed with amazing friends! After getting home at 5am I slept in the floor in Ryman’s room so I would wake up to check on her. I then woke up to lots of text and missed calls because they wanted to recheck Ryman’s prograf level. So I got up and rushed to get her in for labs before it was time for her next dose. As soon as I got back home and almost ready for a nap I got another call that Ryman’s stool DNA virus test came back positive for Norovirus and they needed another sample and for us to pick up a medicine that we could only get at Vanderbilt. So off we went again and then a stop to see the pediatrician so we can get in with the allergist next week at Vandy. Exhausted is an understatement. Its all a blur. We did get a great nights sleep last night though. The good thing about Norovirus is that we have finally have an answer for the diarrhea and possibly the cause of rejection. The bad news is that we are 100% under quarantine for the next week at minimum. Ryman is highly contagious and will continue to shed the virus after symptoms are gone. If you have been around us in the last couple weeks and then had crazy diarrhea and/or vomiting, we are so sorry. The best method to control the spread of the virus is washing your hands with super hot water and soap every time you use the bathroom and Clorox/bleaching your house. If we did a tree of contamination with Ryman at the top I’m sure it would be insanely big by now. Even the nurses on her floor while we were inpatient are not allowed to work if they are having symptoms. Its one of the most contagious stomach viruses and with Ryman being immune suppressed she just hasn’t been able to kick it. However since Friday we have been diarrhea free, so maybe we are finally at the end of it. Or the lactose free milk is helping. Guess we will find out the next time we try regular milk
again. But to add another variable to this allergy issue yesterday while cleaning I found an empty can of nuts!! It took me a second to remember that they had been on the dinning room table. Under the couch was also the lid with lots of little pug teeth marks. This isn’t the first time the dogs have figured out how to get to and get the lid off of something on the dinning table. So now I’m wondering if perhaps there was a leftover but somewhere that Ryman happened upon. Guess the allergist will be able to tell us more but at this point I’m not sure if it was the peanut butter, almond milk, soy milk or a leftover nut from the can of mixed nuts.
Jesus Calling – I remember this one being at just the right time last year too since we had just found out that Ryman wouldn’t be able to receive a piece of Jeremy’s liver until she was much bigger.
Find Me in the midst of the maelstrom. Sometimes events whirl around you so quickly that they become a blur. Whisper My Name in recognition that I am still with you.Without skipping a beat in the activities that occupy you, you find strength and Peace through praying My Name. Later, when the happenings have run their course, you can talk with Me more fully.
Accept each day just as it comes to you. Do not waste your time and energy wishing for a different set of circumstances. Instead, trust Me enough to yield to My design and purposes. Remember that nothing can separate you from My loving Presence; you are Mine.