Ryman had her bone marrow biopsy and the lumbar puncture yesterday.
Her spinal fluid was clear and had no red or white blood cells so that is a good sign. We will not know about bone marrow for a couple days but might get a prelim report before then. They said they would be surprised of it wasn’t in her bone marrow so we expect to see it there. Otherwise we start looking for another reason she isn’t making new red blood cells. The MRI did have a few spots but not from the infection. They think its possibly from pre CPS1 stuff or fat that develops around nerves until age 2 but they do not have scans here to compare too. I think we did one at Georgetown so they are sending it to Dr. Yazigi to compare if so. But no infection there so for this treatment that is a really good thing. She got an NG tube yesterday to start extra food (Boost) just to catch up on nutrition. She and Jeremy hate the tube but I think its a good thing for now. Her albumin is low causing some fluid in her abdomen and lack of consistent nutrition (NPO for the past there days on and off) has added to her mobility issues so her stomach is so swollen. She has been really lethargic for days now and had me really worried. She seemed a little more responsive last night but is back to being weak and sleepy this morning. I pray that it’s just exhaustion from fighting the infection. Still no fevers so that is a good sign. We are probably looking at 4 weeks of IV antibiotic and 1 year of oral antibiotic therapeutic dose and then probably a couple years of a low dose antibiotic. Insane! But if that’s what will get her better than bring it on.
I am thankful today that Ryman is still here with me and that I get to be by her side each day. Sometimes its hard to be thankful when she is so sick but I know that it is a blessing to get each day with her regardless of the circumstances.
My devotional said “Thankfulness is not some sort of magic formula; it is the language of Love, which enables you to communicate intimately with Me. A thankful mind-set does not entail a denial of reality with its plethora of problems. Instead, it rejoices in Me, your Savior, in the midst of trials and tribulations. I am your refuge and strength, an ever-present and well-proved help in trouble.”
He definitely is a well-proved help in trouble. Teaching me daily to lean and trust.
Ryman is in Day 6 of the antibiotic treatment and hasn’t improved so they are doing some more test today just to make sure they aren’t missing anything. She was able to get a PICC line placed so we are thankful for that and hasn’t had to get anymore sticks. Well except the shot she has to get in her thigh every night. It’s a medication that helps boost your white blood count. She had a CT scan, X-ray and ultrasound yesterday. They all looked okay, the GI doctor said he saw a few areas of non specific stuff that they think is just from the infection and she has a small pocket of fluid in her abdomen so we will keep and eye on those. They even checked her ammonia yesterday because she was so malaise. It was completely normal. They will do some additional test tomorrow morning on her liver to make sure its doing its job. Today is going to be a big one though. She is scheduled for a brain and abdomen MRI, a bone marrow biopsy and a spinal tap at around 2 or 2:30 today. We would appreciate prayers that these go smoothly and that Ryman isn’t in too much pain after the procedure. Also for good results. Histoplasmosis can go to your bone marrow and can effect your central nervous system or cause brain lesions. So we want to rule those out. The scans will allow them to know if the infection has settled anywhere and they can focus on site treatment if it has. Thank you all for the love and the suppose during this rough time. We love you all!
Ryman is currently getting a PICC line. The IV has worked great but for the 2 weeks of IV antibiotics she will need the lines needs to be a more long term stable one. She had a rough night on Saturday. She kept spiking a fever every 6 hours and seemed to feel worse. Her blood count continued to drop so she had another transfusion last night. It is likely that all of these symptoms are from the Histoplasmosis. She got her second dose of the IV antibiotic last night and her fever spread to 10 hours. She slept great last night and hasn’t had a fever since 4pm. However her sugar was 306 this morning, so not sure what that is about. Potentially from all the IV fluids she received over night. They were going to recheck it while she is out for the PICC. I got to hold her as they pushed the medication into ghee IV to make her fall asleep. Its crazy how fast that stuff works. Her eyes rolled back and she was out. Hopefully its a good nap. There were talks of Ryman being flown back to Georgetown today if she did not improve and the fevers persisted. We are hopefully that she will feel much better today and that we will be able to stay her for treatment but we are willing to do anything we need to get her better. We should know more later today and I will update. Prayers that this antibiotic is doing its job. She also got a shot in her thigh last night of a medication that is suppose to help boost her bodies ability to make white blood cells. Prayers that it works and she can fight this thing fast.
We are back at the hospital. The team called last night and said that one of Ryman’s urine culture came back positive for histoplasmosis. Wondering what that is:
Histoplasmosis is an infection caused by a fungus called Histoplasma. The fungus lives in the environment, particularly in soil that contains large amounts of bird or bat droppings. In the United States, Histoplasma mainly lives in the central and eastern states, especially areas around the Ohio and Mississippi River valleys. The fungus also lives in parts of Central and South America, Africa, Asia, and Australia.
People can get histoplasmosis after breathing in the microscopic fungal spores from the air. Although most people who breathe in the spores don’t get sick, those who do may have a fever, cough, and fatigue. Many people who get histoplasmosis will get better on their own without medication, but in some people, such as those who have weakened immune systems, the infection can become severe. Crazy, right? Even crazier that we figured it out.
We were suppose to get admitted tomorrow night and start treatment on Monday but Ryman woke with a 103 fever. We are suppose to bring her in if she has even a fever of 100.3 under the arm. So 103 and we are getting to the hospital fast. We are waiting for our room on the floor but we got an IV in on first try! Thank goodness Chris was here, he is our favorite IV therapy guy. He is usually a night shift guy so the fact that he was here is so amazing. PICC team isn’t in on the weekends so we though we would have a really traumatic time getting an IV stared today. They did a chest X-Ray and it looked clear. Did labs and blood culture and just finished the catheter for a urine culture. We will most likely do a few days of regular antibiotic BUT we will start amphotericin (iv med for the histo). Once better after a few days, we can switch to an oral medication called voriconazole. Per Dr. yazigi her Georgetown doctor. We are looking at a week inpatient at least. Histoplasmosis is endemic to this area and our doctors see it in immune compromised patients a lot. So its totally treatable and we are just so thankful that we have something to actually treat. There are still lots of other labs pending but as of now we will treat this. Her blood count came back at a 7.9 so she may end up getting transfused today. We will be on our downtown apartment #8302 if anyone wants to visit. If you are healthy of course ;). We will be lowering her prograf from a goal of 8 to 2 or 3. So big time prayers that this allows her to fight this and not reject in the meantime.
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
It was a long day of waiting around yesterday but we are home tonight! Tuesday night was really rough, Ryman only slept 4 hours and not consistently. It was lots of screaming and obvious discomfort. It’s really tough when there are so many variables and she can’t tell us what is wrong. Whether it was a headache from the medication wearing off, pain from the procedure or the fact that she just really needed to use the bathroom she was definitely not happy. The night and day nurses had to listen to the screaming too. On Wednesday they finally gave her some Tylenol on her way to have a chest and abdomen X-Ray. After both of those and an ultrasound to look for bleeding from the procedure she was out. Napped for 3 whole hours and I made doctors talk to me in the dark in order to not wake her up. The X-Rays and ultrasounds all looked great. We had one set of labs from her IV that came back with a really low blood count again. They called in the PICC team to use an ultrasound to guide the needle and get a new sample without using the IV. So about the 15th stick since last Monday. The second sample was much better and her blood count hadn’t changed much since the day before. That was a very good sign that things weren’t getting worse. Her liver labs looked a little better too. After the prelim report identified no rejection they stopped her Cellcept medication and lowered her prograf immunosuppression medication. We are hoping this will allow her body to fight whatever the culprit is. We were consulted by Infectious disease and hematology. Around this time last year we were inpatient for some digestive issues Ryman was having. They did a scan then to eliminate Post Transplant Lymphoma Disease. Its a form of lymphoma that is a rare side effect of the immune suppression drugs that transplant patients take for life. It is a side effect in the sense that their bodies can not fight the cells that can turn into lymphoma. PTLD can cause bone marrow suppression and since that is one of the symptoms that Ryman is having they wanted to consult Hematology to rule it out. Cellcept can also cause bone marrow suppression. Viral or infection can also cause the same thing to happen. The biopsy did show granulomas which are common in infection or viral cases. So in the end we got to come home today after taking lots of blood from Rye to send out and check for lots of different viral, fungal and bacterial infections. She will have a TB skin test done on Tuesday when we go back for labs. It’s still up in the air about doing a bone marrow aspiration but it can be done as an outpatient patient so they let us check out of our downtown alarm ermine. We may never know the cause of this but as long as she keeps improving and she can fight it without fighting her liver we are fine not knowing. It was a long week but our girl is sleeping peacefully in her crib and mom and dad are enjoying not having to be the crazy parents who insist that no one is allowed to stick their daughter unless they are part of the PICC team and have an ultrasound machine.
Preliminary report is saying it is not rejection! We will know more tomorrow or Thursday about the definite call. So this means that we are probably dealing with some sort of infection. I’m sure they will run more test and there is talks of doing a bone marrow aspiration (the go through the bone and into the marrow and remove some fluid and cells) to look for infection. I’m thinking they may start some broad spectrum antibiotics tomorrow but we shall see. Its crazy when you are excited about an infection. But infection is better than rejection! Hopefully we can lower her immune suppression some and let her fight this nasty thing. 4 months and counting now. No wonder she is so exhausted. Imagine having a stomach virus for 4 months. I would be cranky too. We really just want to see our silly happy girl again. We have so much FAITH that she will be back soon. Goodnight.
So much love, Ryman’s mommy.
We are still waiting on the results of the biopsy. They are hoping to have them this evening. We will spend the night tonight to watch for bleeding from the biopsy. Ryman is napping right now and woke up super hungry. She never wants to eat bread and our amazing friend Matt Gary brought us Sub Stop for lunch and Ryman ate lots of my bread.
I will forever be grateful for a gift from Marcia Ramirez, the Jesus Calling devotional always speaks so much to me. You can buy the book as an App on your phone, its amazing! Even on the second year of having it the words speak so much to where we are today.
Do not let any set of circumstances intimidate you. The more challenging your day, the more of My Power I place at your disposal. You seem to think that I empower you equally each day, but this is not so. Your tendency upon awakening is to assess the difficulties ahead of you, measuring them against your average strength. This is an exercise in unreality.
I know what each of your days will contain, and I empower you accordingly. The degree to which I strengthen you on a given day is based mainly on two variables: the difficulty of your circumstances, and your willingness to depend on Me for help. Try to view challenging days as opportunities to receive more of My Power than usual. Look to Me for all that you need, and watch to see what I will do. As your day, so shall your strength be.
I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe. That power is like the working of his mighty strength, which he exerted in Christ when he raised him from the dead and seated him at his right hand in the heavenly realms.
Look to the Lord and his strength; seek his face always.
Your sandals shall be iron and bronze; As your days, so shall your strength be.
—Deuteronomy 33:25 nkjv
The past two weeks Ryman hasn’t been herself. Irritable, fussy and just all together blah. We were admitted last Monday and spent 3 days inpatient with an IV in her foot, which was not fun. She had to have a blood transfusion on Tuesday and we got no real answers but she seemed a little better. After a rough weekend and elevated liver numbers she had a liver biopsy today. Just talked to the doctor and he said it went great. They actually went in through her jugular vein in her neck and all the way down the vien right into the liver and took a tiny piece of tissue. Youngest person he has ever done this technique on. It lowers the risk of bleeding. We should get to go back to soon and see her. Hopefully find out results in a couple hours. Prayers for answers.
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).