Ashley's Procedure

We took Ashley for an IV sedated full vaginal exam, complete with ultrasounds of her uterus and ovaries, and possibly a biopsy. They are trying to figure out why we can’t get rid of this chronic infection. Over the years, my children have had many sedated procedures. Hailey and Josh have gotten to the age where it is relatively simple. I explain what is going to happen, and offer them an incentive for not acting terrible, even though they are tired and hungry. And though it is not fun, we get through it with relative ease. Now Ashley is a different story, there are a lot of issues to handle. Let me walk you through having a sedated procedure done to a child with autism – or at least my child with autism. Today we needed to arrive at the hospital at 6 am, since it is an hour away, we left at 5. Of course, Ashley is not allowed to eat or drink anything, so I take her straight from her bed to the car. As we drive to the hospital, she is using her talker to ask for all sorts of things to eat. When we arrive at the hospital, she puts it all together, and realizes something terrible is about to happen. I had already explained to her what we were doing, but she didn’t understand until then. She immediately goes into a full scale screaming, biting and hitting herself meltdown. I really hope none of the other patients were trying to sleep. Then after we check in, we have to ride on the elevator – a very anxiety producing activity for Ashley. We get to her room, within minutes; the self-injury has already intimidated the nurses. They would like to put an ID bracelet on Ashley. This is not happening; she is not even comfortable with me wearing the ID bracelet. Ashley hates anything on her arms, or any part of her body. We can rarely even get a band-aid on her. I have to give these medical professionals credit- everyone was wonderful about seeking advice from me, and also taking the instructions I gave, throughout our experience. I tied the ID bracelet to the back of Ashley’s hospital gown. Next came how to do an IV, as I already mentioned Ashley HATES anything on her arm or hand. We agreed they would knock her out with gas first, and then put the IV in her arm. Then, there was the waiting to go to the operating room. She was asking for every food under the sun, and getting more impatient by the minute. When they came to get her, they let me stay with her all the way to the operating room. A short time into the procedure, I realized Ashley had gone into the operating room holding her “security” plastic. To anyone who didn’t know, that could be seen as trash. I found a nurse, and explained that it was most definitely not trash to Ashley. They offered to let me in the recovery room before Ashley was awake. They actually had me in there, before she even got there. This was the first time in her life; she did not wake up from sedation, and immediately start screaming. Of course, the second she opened her eyes, she tried to jump out of bed and rip out her IV at the same time. So we had to hold her down, trying to prevent her from hurting herself. Last, we had the hour in post-op. She spent the entire time asking to leave, trying to leave, and handing me all of our stuff. At one point, she even looked to the window as an escape route. The staff was nice enough to have a Dr. Pepper waiting for her in post-op. Then there were the last dreaded details: trying to take her temperature and blood pressure, finishing paperwork, and the final elevator ride, before we were finally set free. Ashley actually handled this a lot better than she would have a couple of years ago. She only cried in the beginning, pulled herself out of the meltdown quickly, and other than her insistence to leave and eat the entire 4 hours we were there (which is understandable), behaved pretty well considering the circumstances. We have had so many experiences where staff has tried to force Ashley to follow their expectations. It never works, and just infuriates her. She is not trying to be difficult; she is just scared and doesn’t understand what is happening. This time the doctor was willing to adjust her schedule to accommodate Ashley’s needs and gave the staff a lot of helpful recommendations. Having a patient and caring staff, who was willing to bend rules and make adaptations for Ashley, made an exhausting and intense day go a lot smoother. All in all everything went well. They did not have to do a biopsy, and didn’t find anything unusual. We still are waiting for the rest of the test results to see how to proceed from here. We are glad it is over, and pray we get some answers that make putting her through such an invasive exam worth it. Now that we are home, she is running around full of energy. I can tell she has some slight pain, but seems to be recovering nicely. I, on the other hand, would have really enjoyed a nap! Originally posted November 2011