Today, we spent Gracie's 9 month birthday having her second video urodynamics study done. For the second time the testing was somewhat inconclusive due to her screaming. She was a trooper and didn't try to move around, but started crying as soon as they started inserting things and never let up. Sweet girl recovered quickly and has been her usual smiley self the rest of the day. They want to give her "Giggle Juice" to sedate her next time for more accurate results. We won't get a full rundown until we see her urologist in July. The Dr. who did the procedure could tell that her bladder is contracting, but due to her being so upset, couldn't tell if it was relaxing. They are worried about the pressure in her bladder. He recommends significantly increasing her Ditropan, but I'm very anxious to see what the urologist says and if he can explain the reasoning behind it. I'm also hopeful that we will be accepted into the Spina Bifida Clinic at Scottish Rite Hospital in Dallas to get a second opinion on, well, everything.
It's so frustrating to hear what the Dr. is saying but continue to question what the best course of action for my daughter will be. I knew from last time that this would be a very stressful procedure for Gracie and me. I tried to be proactive in finding ways to comfort her and decrease her pain, but the doctors were very difficult to work with and then were frustrated with me when she wouldn't calm down. I just don't get it. So many major decisions down the road and so few answers. It's hard to know where to start. I do know that God's gotten us this far and shown us a great deal of grace in our Grace's short life and he will get us through each of the challenges that comes along. I just have a hard time giving up that control.
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