18 months, 1 year home, 1 ER night

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

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Beach and the Alkaline Phosphate Mystery

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).

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