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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.

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