Infusion done
It's been a tiring, long day! The infusion is done and it went about the same as it always does, low blood pressure, fever and then at one point this afternoon when they increased the rate of infusion, it started getting hard for her to breathe and couldn't stop coughing. Who knows what was happening! They backed off and slowed things down for the last 3 hours and she improved somewhat.
I am not looking forward to hashing out a care plan with our doctor. I heard back from Seattle, they agreed that the new drug would not be a good option for Shelbie but the lab who was part of the studies and manufacturing I guess is in Seattle so our doc there was going to check right at the source and get back to me after they give her their opinion. What isn't in Seattle? It's amazing to me the kind of resources they have medically speaking in that town! Dr. S has certainly been a gold mine of information.
While sitting around the hospital, I got the recording studio booked for Saturday. Shelbie will be recording a song for the movie I am putting together for the Butterfly Guild. The young men that will be working the studio that day are so nice and I think I will be able to pay them in cookies! That's even better! The talk is written so I just have to get the video put together and Shelbie will need to read her talk while being taped so we should be ready to send it all off next week! I'm not sure if I will be able to post the movie since that would mean getting permission from lots of families to post their children on my blog. I will see how it all works out though. If nothing else, I will post Shelbie's song.
I am not looking forward to hashing out a care plan with our doctor. I heard back from Seattle, they agreed that the new drug would not be a good option for Shelbie but the lab who was part of the studies and manufacturing I guess is in Seattle so our doc there was going to check right at the source and get back to me after they give her their opinion. What isn't in Seattle? It's amazing to me the kind of resources they have medically speaking in that town! Dr. S has certainly been a gold mine of information.
While sitting around the hospital, I got the recording studio booked for Saturday. Shelbie will be recording a song for the movie I am putting together for the Butterfly Guild. The young men that will be working the studio that day are so nice and I think I will be able to pay them in cookies! That's even better! The talk is written so I just have to get the video put together and Shelbie will need to read her talk while being taped so we should be ready to send it all off next week! I'm not sure if I will be able to post the movie since that would mean getting permission from lots of families to post their children on my blog. I will see how it all works out though. If nothing else, I will post Shelbie's song.
Oh I wish I knew the right words to say to bring comfort to your heart and mind. It saddens me to read about Shelbie's illness. I hope and pray that her doctors will be able to come up with a care plan that will be best for her. I bet it was sweet to see your kids sleeping by each other on the floor. Even though you didn't take a picture with your camera, I bet you took a picture with your mind and will save it in your heart. What can I do to help? What night can I bring a meal in? PLEASE let me help!
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