Friday Ryman turned 18 months old! Just as crazy is the fact that we have been home from DC for 1 year! That’s why it’s just so fitting that we spent friday night at the Emergency Department at Vanderbilt Children’s. Ryman has been acting strange all week. Mainly really clingy and not as active, if you’ve seen Ryman she is definitely not a lounge around the house girl. She wants to constantly be doing something. However, this week all she wanted to do was lay in your lap and she was not okay if you sat her down to go do something. She had been refusing food and drinks all week and we were having to force her to take them. Liver labs were good on Tuesday but she was a little dehydrated and had to be stuck 3 times. Jeremy said she was still crying when they got off the elevator to the car:(. She was having shaky hands when I woke her up Friday morning which can be a sign that her immune suppression meds are to high. It can also give you headaches and cause restlessness. So I took her to clinic to get a prograf level checked just to make sure. Got her on the first stick luckily. Her level was an 8 so that wasn’t the culprit. Ryman’s nanny, Tiffany, called that afternoon and said Ryman had just not been herself. Inconsolable crying, clingy, and not wanting to eat. She laid beside her on the couch for a while and that is definitely not Ryman’s demeanor. No fever but she had also been pretty clumsy, having trouble keeping her balance and not sleeping well. She is getting her incisors and I have heard that’s really painful but not sure if it can wreck this much havoc on her body. So I called the transplant team and with her past history with the blood infection they thought it best to take her to the ER and have a blood culture done. We had a small vomit on the interstate on the way to the hospital so I started to think there is no way teeth can do this. After getting a catheter, which was terrible, to get a urine sample and a failed attempt of a nurse trying to put an IV in a vein near her shoulder (she had no good veins since we have been getting labs every week, sometimes more than once) she had an ultrasound. The ultrasound was clear and showed nothing wrong with the liver blood flow. Another nurse tried twice for an IV, once in her hand and once in her foot with no success. Finally another nurse comes, ties the tourniquet really tight, with Ryman screaming and me holding her down he starts thumping her hand really hard. My thoughts are that I want to yell at him to stop and I want to run out of there with her and not let anyone hurt her. I put my head to hers and keep telling her she is okay. I know that he has to do this in order to get the vein and when he does we will not have to stick her anymore. He gets the vein, IV is in and they start a bolus of fluids to hydrate her. She soon falls asleep in my arms and we wait for lab results. One of the hardest things is deciding whether to take her to the hospital. I know that taking her is hours of trying to get a vein and is very traumatizing for her. Yet not taking her means we could miss something really bad. They did a blood culture and we are still waiting to see if anything grows. All labs looked good and she drank some milk and water so they sent us home at 4am and said she may have a stomach bug. Not even a block down the street and she vomits everything up. So 4am on the side of the road and I’m cleaning up vomit and changing her clothes. We made it home and she slept most of the night. She seemed to be in better spirits but was really weak and couldn’t really walk well. She kept falling down and just wanted to stay in my lap still. I think, she is just really tired and exhausted from what ever is going on. Last night Ryman wouldn’t go to sleep. She stood and screamed in her crib until I came in and then she clung to me so tight. Ryman has never slept in our room and I am such a heavy sleeper that I’m afraid she would wake up before me and fall off. So I climb into her crib at 3am and slept until the morning. Jeremy was on his way home and Ryman was still sleeping hard. I tried to wake her but she didn’t want to wake up. I took her downstairs and gave her some Pedialyte. She drank 15oz!! I called the doctor and got an appointment to make sure she doesn’t need IV fluids and see if we can rule out an ear infection. So we took her to old harding pediatrics waiting to have then check her ears and make sure she isn’t dehydrated. They think it could just be the aftermath of a stomach bug. It’s been a very long weekend. Prayers that we can pinpoint what is going on and that Ryman feels better soon. It’s going to be a push lots of fluids and rest kind of day. Love, B
It has been a while since I have updated the blog. I’ll be honest, there have been several times I started a blog and then something happened and I never posted it. Most of the time that something has been me falling asleep. (Yet again I fell asleep before finishing this last night )It has been a busy couple weeks since the Liver Life Walk and my last post.
In order to catch up I need to jump back a second before the walk.
I never got to post about Ryman’s first beach trip. Ryman and I rode down with Allan and Patti so we could take lots of stuff with us, of course. The trip started at 3am and with Ryman having a blowout diaper right before we left. It was super gross, smelly and yellow… which all points to a virus. I was a little worried about leaving town (Vanderbilt) but decided to go and if we needed to come back early we would. Ryman continued to be sick for most of the trip, she didn’t have a fever and was eating and drinking great so the doctors agreed that we could stay and just come straight for labs when we got back. Ryman did love the ocean though. I thought she may fall asleep as soon as she heard the ocean waves since she sleeps to that sound every night on her noise machine. She was good though and only fell asleep once. She wasn’t much on the sand but she would have stayed in the ocean all day. She tried to drink the salt water and was screaming with excited at every wave. Aunt Sara and Uncle Robert just happen to be on vacation at the same time and were able to stop by and visit too. Jeremy, Ryman and I flew back to Nashville on her 5th airplane ride! My first time on an airplane was in high school! She has already blown me out of the water on that one. We got back to Nashville and went straight to labs. Those came back in normal range but up just a bit. Nothing to worry about though. However, the next week Ryman’s numbers were up more and the following week up enough to be concerned. That dang Alkaline Phosphate was back up to 2900. The following day we repeated and they were again up some and the Alkaline Phosphate had jumped up to 3000. The doctors called to schedule another liver biopsy to check for rejection again and then decided to up her immunosuppression meds and wait a couple days and check to see if that could get it under control without the biopsy. It did lower her liver function numbers but her Alkaline Phosphate was more than the test can even detect, >4555. So no liver biopsy or time in the hospital, thank god! The only frustrating thing is that no one seems to know what may be causing the high Alkaline Phosphate. For now we are not too concerned and we are going to just watch it. Yesterday’s labs were back to almost normal but Alkaline Phosphate was up and she was dehydrated. So lots of fluids today and no labs next week unless something changes. She did have a rough day today and I can see a white point under the gum where her incisors are trying to come in…. dang teeth. Just praying her Alk Phos goes down.
It is obvious that you guys continue to pray for Ryman, because even though numbers have been a little wonky, she is still doing great. Thank you so much! God has been so good to our family!
Pictures from the beach and random fun times (including a trip to the zoo).
Team Ryman was amazing! We had over 67 team members at the walk yesterday morning! How amazing! We can not thank each and every one of you enough, walkers and donors, for the support and love we have felt through this event! Even people wearing shirts when they couldn’t make it. Makes my heart so happy! We raised over $4,000 and still have donations coming in. The most amazing thing is that my company is going to match at least $3,000 of that for a Team Ryman total of more than $7,000! That money can do a lot of research and support. Since 1979, the Research Awards Program offered by the American Liver Foundation has provided more than $24 million in research funding. Over 800 qualified scientists and physicians have pursued careers in liver disease research and treatment as a result of receiving these grants early in their careers. We are playing a huge role in their ability to continue these grants!
I also look at the walk as a way for us to honor the two babies who play a huge role in why Ryman is here with us today and running around crazy like a normal toddler. There are two livers in the clouds on the Team Ryman shirts to represent them. We walked for them yesterday as well. So if you aren’t an organ donor please consider. http://organdonor.gov/mobile/
Can’t wait to do this event again next year!! Thank you all so much!!
We have gotten many text and messages about other sizes and styles so we have new options available. If you have already signed up for a different size or syle and would like to change just text or email me and I can change it for you.
Adult Size Shirts:
I completely forgot to include the order link yesterday.
You can PayPal to firstname.lastname@example.org
Working on getting another option for youth sizes.
On September 27th we will be participating in the Liver Life Walk Nashville at Percy Warner Park where steeplechase is held. Ryman is the 2014 LIVEr Life Walk Champion. The walk starts at 9am with registration at 8:30am. The walk is free but you can donate to our team if you would like. Sign up or donate to Team Ryman at http://go.liverfoundation.org/goto/team_ryman
There is a join team button at the bottom above the list of team members. You can donate by going to the main page and selecting donate and choosing a member of team Ryman to donate too. My personal page is http://go.liverfoundation.org/goto/team_ryman_cps1
Shirts for the walk are ready and you can buy one even if you aren’t able to make the walk. We can ship shirts out as soon as they get in or if you are participating you can get them the morning of if I don’t see you before then. Shirts are $20 with a percentage of sales going to our team for the American Liver Foundation Nashville. Orders will be taken until the September 10th. You can paypal money to email@example.com for those who want to pay that way or you can give us a check or cash when we see you. Or put it in the mail: 8106 Stacy Square Ct Nashville, TN 37221. The more we sell the larger percentage we will be able to donate! If you think you may need a different size than is available let us know and we can look into options. Also, This is an American Apparel shirt which is great material but they tend to run a little on the small side so take that into account when selecting your size. Big thank you goes out to Corey Snyder for designing this amazing shirt and Nicole DiPatrizio Eggers for hooking us up at custom ink!
Corey did such an unbelievable job capturing Ryman’s story in one graphic! If you ever need someone to design something for you, he is the man!
The Nashville skyline and the DC skyline are merged together to show Ryman’s cross country ventures as well as represent the hospitals / teams in each city since we love them both.
Mixed in with the clouds are the 2 livers Rye received, they were a gift from heaven and we wanted to pay respect to the donors and their families in some way. On the bottom border is every bible verse quoted on the blog. At the very bottom there is a propeller for Rye’s first airplane ride. Finally there are some cool crab claws to represent Maryland, because you know, thats what Maryland does.
Join us in raising awareness and funds for reasearch, education and advocacy for those affected by liver-related diseases. Ryman’s doctors have recorded grants from the ALF and we want to help them continue to do so! Thank you everyone who has already signed up or donated!!
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
AMEC Environment & Infrastructure
Office: (615) 333-0630 ext. 7072
Cell : (615) 974-7077
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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.
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.
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.