Once there, I tried all the things I knew to help, including getting her meds, applying topical pain relief to the area, ice, assisting with re positioning. She couldn't move without screaming due to the sharp pain at the crease of the hip joint. Not good and I was scared. I am always scared when she is unable to reduce a dislocation or unable to move a joint after a reduction. If she couldn't even get into a sitting position, there was no way I was going to get her from that space to a car and to the hospital. My internal thought process was that I would have to call an ambulance. They would carry her out. She would be overwhelmed with anxiety. That situation is not good.So, based after years of dealing with dislocations, subluxations, and chronic pain, we talked and decided to try again. We slid pillows carefully under her head, then back, then legs to help get into a different position. Sometimes, we have found,with the hip it is helpful to sit. It was so very difficult. There were many tears, but she did get into a seated position and then we did some at home basic tests to make sure she could still move despite the pain and she could, so the leg was functioning, it was just in extreme pain and some numbness off and on. Ok, so in our world, that is progress.
Now, as anyone with dislocation experience due to Ehlers Danlos Syndrome knows, the next step is to go to the Doctor where they always order an Xray, but with the dislocation reduced, it will always look fine. Then, they will recommend rest, ice, pain meds for few days (duration may vary) and sometimes bracing and supports. Then, if no quick improvement, it is on to the MRI to look and see if anything is torn around that area.
Knowing the process, and knowing how long it takes at the Bone and Joint Institute as well as the ER, it is never something fun to do. It takes a long long time for a kid who is already in pain, and it hurts to take Xrays in positions that increase that pain. So of course the kid did not want to go.
This is where I am talking about STRENGTH because I know that this will happen and if I could just WAIT it out a couple of days, I could see if she is getting better on her own, skipping the rather pointless Xray step and determining if we need to move on to the MRI step within the comfort of home. However, when a child attempts to move and screams out in pain, tears streaming down her cheek, it is impossible to be calm, internally. That is when a mother needs the help of a medical professional to make sure that all that can be done IS being done and that nothing is being overlooked. That is why we always go to the pointless Xray appointment right away.
It brings peace of mind to know that the orthopedic surgeon has at least looked at the hip and put her expert opinion on the table for us. Now, the teen in question says this is a waste and there is no point because no one ever actually helps in these situations, but that is not entirely true. There is a wisdom of experience being learned here that will help her in the years to come. For example, she will know that tearing feeling in a joint and she will know that when it feels like that, it is still ok based on time and again of this happening and it requiring a week of rest and then rehabilitation to get back to normal. She will know that after feeling that particular level and type of pain, that the Xrays and sometimes the MRIs come back saying her joint is actually OK. There may be some minor issues, minor tears, but nothing that requires surgery. She will know that if she experiences a new level of pain and sensation, she should get it looked at immediately, and she will know when she can wait and rest at home.
As her mother, I am her extension of care. I am here to smooth things, comfort, help, protect, but I will never know her body the way she will know it. While yesterday was scary, long, and so painful for her, it was not a waste. What she can take away from that is a valuable piece to add to the ongoing game of Ehlers Danlos Syndrome. A piece that will serve her well in the future. One day, she will be able to tell me what she needs, or even manage her own care and each of these painful days is giving her the tools to get her to that point. Until then, we sit side by side and make moves, together, always trying to win a round in an unending game against Ehlers Danlos Syndrome.
