Day +117 - We are home!!!!!!!!
It's a little bittersweet but we are home and soooo happy!!!!!
Warning: this is a long post and requires a beverage at the end so grab it now :)[...]
Posted 2016-11-20T01:00:17Z
Lyla Edgington - Journal
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Posted 2016-11-07T03:51:46Z
Day over 100 - Smiling again
Lyla's 100th day was last week but wasn't as joyous of an occasion as we hoped for. After 5 days of Lyla being extremely upset and not sleeping, she was finally admitted to the hospital on Friday. The doctors and us went in circles trying to figure out what was wrong...She had a short brain MRI which did show some enlargement in her ventricles but not enough to warrant the extreme discomfort she was in. She had constipation and a bulging belly button from eating so much on steroids, but no hernia. Her crying and lack of sleep was well above the level expected from steroids. Even her first two teeth to pop up couldn't have caused that much pain. I spent hours describing over and over again exactly how Lyla was behaving and assessing every move she made like waking up crying and tapping her head with her thumb. The puzzle was finally solved by one of several doctors involved....Lyla had a reaction to the IVIG transfusion she received last Monday. The transfusion is donor antibodies used to tell her cells to stop creating the bad antibodies causing her platelet levels to drop. Because the transfusion is a mix of lots of donors, reactions are more common and cause migraine symptoms that can last for several days. So our poor little girl was in so much pain from having terrible headaches and the lack of sleep caused a vicious circle of constant discomfort. Luckily she was released from the hospital yesterday because she had a good night of sleep and the pain seems to be completely gone now. She has been her happy, charming self today and spent all day playing with her Nanna visiting from England :) Despite the horrible week, the good news is the steroids and transfusion are working really well! Once again the doctors are amazed by Lyla - in less that 10 days her platelets have increased from 30k to 200k!! We are now weaning her off steroids this week and hoping her platelets stay the same so we can go home soon![...]