Update April 5th

Hey there friends. We are back at Children's again. There has been a lot happening in the past 3 weeks. We brought her back last Wed and unfortunately it looks like she has pneumonia although there seems to be some debate among the staff about that. Over a month ago, Children's prescribed a medication called propranolol to help with her storms. That worked very well until Beth and Aimee went to Austin to see Grandma and Grandpa. We think the change in schedule and environment triggered her storms again and now propranolol does not work at all. After returning home, she seemed to improve briefly and then went downhill again. Lately she has been going through quite a lot for such a little lady. She sometimes has storms 4 or 5 times a day and they are pretty scary to watch. When we got to Children's, they decided to replace her medication with something called clonidine. However, instead of giving her .05 ml they gave her .5 ml, 10x the normal dose. It put her into a super relaxed state and dangerously slowed her heart but she came out of it with no expected long term effects. Only problem was that at the peak of the medication's effectiveness, she went into a very bad storm confirming it does not work for her. We thought that things were going alright and then late last night she started to get some thick secretions... basically thick and nasty phlegm that was making it hard for her to breath. So now they are testing her to see if she has a respiratory virus and we are still in isolation. Long story short, we have no clue still of what's going on and we are waiting for a care conference with all of her doctors to make a decision of our next step. Please be praying that we find a medication that works for her or something changes with her health. Praise God for the staff at Seattle Children's for their dedication for this little girl.