She had aquatic therapy twice this week so far. Monday's was not so great. She promised me that she would give it a chance, but she wouldn't cooperate at all. On Wednesday it went well! I cannot say for sure that she enjoyed it, but she at least cooperated. She looked like she was having fun. Part of the reason that she did so well, I think, was Tuesday's Biofeedback session. What a wonderful tool! Again she was hooked up to the little EKG probes, and again we could see her tension visibly on screen. The cool part about that was that when she was upset about something we could see it shoot up to like 18, but once she started deep breathing and listening to her relaxation exercise it dropped down to about a 4. As Ginny pointed out, "see, Emily? You have the power to relax yourself. You don't need anyone else to do it for you". How cool is that? We discussed aquatic therapy quite a bit that day. I was very pleased that she did so well the next day.
Yesterday was the kidney stone procedure. Of course, it wouldn't be our bumpy road if anything worked as intended! The doctor called me on Tuesday as we were walking into a hospital for Emily's biofeedback to tell me that we may not proceed with the lithotripsy (shockwave of the stones). I really had no clue what was planned, but we are pretty used to this type of thing. Things always work out for the best whether we stress or not, so I chose not to stress. He called me the next day to say that they had a new plan, but it would likely mean two different procedures. He had initially said that the lithotripsy would require two procedures also, so it wasn't much different to me in that respect. He told us that he conferred with specialists all over the world to determine the best course of action for our special girl.
They put a stent inside of her urine tube to try to make it bigger. He told me that it was likely they would not be able to get the ureter opened up enough to grab the stones today. Sure enough, he was right. He said that she would have to have the stent in place for 1-2 weeks. It should dilate the tube enough to pull them out later. Right now she hurts but not too badly. They gave her pain medicine, an antibiotic, a medicine to help with bladder spasm, and another med that I cannot recall right now. The first few hours were awful! She felt so terrible, and she was in so much pain. Right now she seems to be her normal self. It's probably somewhat the pain meds, but it is reassuring.
The only beautiful thing about this is that aside from my working this weekend, we have no appointments planned until 2 weeks from now. It really just depends on when we go back for the second procedure now. Thank you so much for your prayers and love. We felt it, it helped me to be calm and collected. Emily was still a bit of a mess, but still much better than most kids would likely be. Thank you for your support. It is very appreciated!!!
The next post will be a how-not-to-die-at-the-hospital type of post, I think. I have spent a lot of time comparing how I was ten years ago to now. I have learned so much, become so organized which is really weird for me. I feel like I need to share it. That is coming! Stay tuned!
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Friday, July 26, 2013
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