Transplantiversary!

It is really hard to even wrap my mind around where we were this time last year. Ryman was Day 1 Post Transplant! We met Katie for the first time on this day last year also. She has been such an amazing support through all of this. Her daughter also has CPS1 and was transplanted at Georgetown at almost the same age as Ryman was. She is my go to for crazy transplant questions and even random, ‘so did L go through a stage where she poked at her belly button and pushed on her scar lots’, questions. Today my worries were if Ryman needed to poop and are her teeth getting stained from the iron supplements… man we have come a long way in a year. I watched Ryman sing and dance today and thought of how amazing our God is that she is with us. When I think of this I will be honest, it’s hard to think of the children who left this world and gave Ryman the chance to live. It’s hard not to ask, why? Yesterday and today are such emotionally exhausting days. They are days of joy. Yesterday was the anniversary of the ‘call’ and today was the anniversary of when she actually got the new liver. They are days full of thankfulness and happiness that the first year is behind us and Ryman is still here with us. They are days of feeling heavy hearted for the family who are having the first anniversary of their child’s death and the thought that we will repeat these emotions on Sept 18 when it’s the anniversary of Ryman’s second transplant. It is so strange to be pulled in such opposite directions of emotion. Happiness and sorrow. I hope that the families can find even an ounce of happiness in the thought that their child’s life ended with more meaning than most of us will leave this earth with. If you aren’t an organ donor please consider it. Each day, an average of 79 people receive organ transplants. However, an average of 18 people die each day waiting for transplants that can’t take place because of the shortage of donated organs. People of every age give and receive organ donations. In 2013, 28,953 people received organ transplants. Below is the number of recipients by age group followed by the number who received organs from deceased and living donors:
o 1 Year Old: 260 (241 deceased, 19 living donors)
o 1 – 5 Years: 545 (437 deceased, 108 living donors)
o 6 – 10 Years: 292 (228 deceased, 64 living donors)
o 11 – 17 Years: 721 (591 deceased, 130 living donors)
o 18 – 34 Years: 3,081 (1,983 deceased, 1,098 living donors)
o 35 – 49 Years: 6,310 (4,699 deceased, 1.611 living donors)
o 50 – 64 Years: 12,674 (10,516 deceased, 2,158 living donors)
o 65+ Years: 5,070 (4,271 deceased, 799 living donors)

I currently know many families whose children are waiting on transplants Even a little boy whose mom is on the hunt for a living kidney donor since he will wait forever on the list with the possibility of never getting one in time. If you have any questions feel free to ask, there are many misconceptions about organ donation. It’s an amazing and beautiful thing these two children have done for our Ryman. I want her to never forget the lives that she carries with her daily.

So much love, B

Brandy Little, PG, CFM, GISP
GIS Analyst
AMEC Environment & Infrastructure
Nashville, TN
Office: (615) 333-0630 ext. 7072
Cell : (615) 974-7077
http://www.amec.com
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Alkaline Phosphate

That dang Alkaline Phosphate is finally coming down. Monday was down to 2800 from >4555, yesterday was 2100. Slowly but surely. AST and ALT were up a bit on Monday but are coming down again. I think even our doctors had a sigh of relief when the Alkaline Phosphate came down Monday. They were in the process of referring us to the hematology team to make sure we weren’t dealing with something more than a virus and infection.
We have 6 more days of IV antibiotics so my prayers are that her levels are normal enough by then to go to at least weekly labs since the picc has to go. However I did notice tonight after flushing her line the catheter site looks a little red. So I emailed a picture and will hear from them tomorrow on whether I need to take her in to have it checked. Better to be super cautious. She doesn’t have a fever so I’m thinking it may be okay. It’s been a long couple weeks and the exhaustion has taken a toll on me. I typed most of this last night but fell asleep before I hit publish :),
Prayers for continued healing and for no new line infections.

Ryman is going to a new nanny. She has another play mate there named Riley. Ryman is teaching her new trick.

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Home again!

Sorry for the late update. We gt to come come on Sunday! We had some amazing nurses this stay and made some new friends who loved on Ryman so well. I will be administering IV antibiotics at home for the next 10 days. Total Nurse Brandy. Ryman’s numbers were a little crazy yesterday but the Alk phos was down to 2500 so I’m hoping the others will level back out when that is back to normal.

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Another night.

We thought we were going home today but they wanted one more negative culture. So praying for tomorrow. Ryman was a little bi-polar today. Either extremely happy and trying to make us laugh or super fussy and signing finished to everything we offered. She mainly wanted two things, food and the iPad. Oh boy. She is definitely getting some of those steroid cheeks back. Our little nugget again. Patti is here helping so I get to sleep in my bed with two awesome pugs tonight. Jeremy is in Baltimore and got to hang with Julie and Corey tonight, miss those two like crazy.
Prayers for Matthew and Braden who are both at Georgetown prepping fit transplant. One will get the transplant and one will not. Prayers for the chaos and emotions of what the night may bring. Goodnight to all.

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Klebsiella pneumoniae

We found out today that it isn’t a picc line infection. It’s actually a bacteria that is found in your gut called Klebsiella pneumoniae and if you are immune suppressed and you have lots of diarrhea it can get into your bloodstream and cause a blood infection. So not great but we now know that it isn’t the line. The good news is the antibiotic used to treat it is the one she has already been on for two days. The culture from yesterday hasn’t had any growth yet. So if it still has no growth tomorrow morning then we may get to go home tomorrow on IV antibiotics!

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Our downtown apartment.

We finally got a room at around 1pm today. Ryman’s ultrasound came back normal. No blockages. They took blood cultures from the line to see if anything grows. They will not pull the line unless something major comes back. We are still unsure if the vomiting and fever are related to the Norovirus or if Ryman has picked up another virus. Her temp went up to 104.1 this morning but has stayed lower after the second dose of Tylenol. Not sure how long they will want to watch her. Thank you everyone for the continued prayers that Ryman can kick this stuff.
So much love, B.

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Hospital.

We are currently admitted to Vanderbilt. Around 9pm Ryman started vomiting and had a fever. It ended up spiking and went to 103.4. With her having the picc line we have to go straight to the ER since you risk having a line blood infection. They started IV fluids and antibiotics. We just finished the ultrasound too. Her labs are a little wacky. We are thinking this is still just the Norovirus since her immunosuppression level was so high today. We will update as we know more. Prayers please.

Norovirus and allergies.

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.

August 17

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.

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Home.

We are home!!! Ryman came home with a picc line and a ton of medications. We will go back to Vandy twice a week for labs to keep a losses on her. So so grateful to be home and for Ryman to be sleeping in her own bed. Continued prayers that her viral symptoms get better over the weekend and that labs on Tuesday are back to normal.

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Amazing community.

Ryman’s numbers have been improving. Her Alkaline Phosphate is starting to go down. Her GGT is still going up so they decided to repeat the ultrasound image study just to be sure there were not any bile duct obstructions that were missed with the first study. We got results back yesterday and the bile ducts look great so we can officially rule that out. They are lowering her steroids every day -and we get to switch to oral ones today. We are having some epic meltdowns. She didn’t go to sleep last night until after 11pm a could nights and 10pm last night. She stood in front of her room door screaming at the top of her lungs, throwing herself down in the floor. Super dramatic! They have started her on another immune suppressant called Cellcept just to be cautious and incase she isn’t absorbing the prograf correctly. She is still having virus symptoms so yesterday the infectious disease doctor came by and they ordered several more stool cultures and test to check for some other not so common viruses. I am happy about that but until those results come back she is on isolation which means no leaving her room. Not an easy job keeping her occupied in this room. Not sure what the plan is as far as going home we were originally hoping today we would set to and then do labs twice a week to keep an eye on her numbers. With the new stool studies I am not sure if they will want to keep her a couple more days.
We are so thankful for all the friends and family who have helped so much this week. From food, flowers, watching Ryman so Jeremy and I could grab dinner together and coming to just hang out with her and us. We are so truly blessed and have the most amazing people in our lives. For your prayers we are forever grateful.
“Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock.”
—Matthew 7:24–25

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