Another medical adventure


 We have gone to our fair share {or more} of doctors appointments. Bridget is no stranger to her pediatrician, cardiologist, ENT, developmental specialist, and frankly just Blank Children’s Hospital in general. It seems that we keep acquiring more specialists, even though I didn’t think that was possible due to how many people we already have to see.

Because of Bridget’s history with the medical profession, I wouldn’t be surprised at all if she did have some sort of “white coat” trauma. However, even though we know that Bridget secretly despises the doctors office/hospital (unless it’s going to her developmental doctor who she loves to pet and give slobbery high-fives), we try to make the best of every appointment, even just trying to savor the time that we get one-on-one with Bridget.


Nevertheless, there is absolutely no way to adequately describe what it is like to, time-and-time again, restrain your child while they are writhing in pain being poked and prodded while 5 other nurses and medical staff are also attempting to confine them. This last occurrence, I felt like I was having an out of body experience. Everything was moving so slowly, I looked at the faces of each nurse, as well as the anesthesiologist, to see their looks of concern and anxiety levels rising. 


With Bridget being nonverbal, and her cognitive abilities very low, there isn’t even an opportunity to explain what is going on to her. There is no way to console her and tell her that the tests the doctors are running will be beneficial and help her with her ever growing list of challenges. I cannot even begin to soothe her when it had them been more than 30 minutes of attempting to put in an IV after multiple failed attempts. By this point, I had been sitting on the patient bed wrapping my body like a pretzel around Bridget,  praying for her to calm her body down so we could just get the IV in, while simultaneously asking everyone AGAIN why we weren’t using gas to sedate her. 


I have been in this same “moment” many times, where it feels like I’m pouring all of my strength and being into trying to take Bridget’s pain away, while simultaneously trying to convince doctors and nurses that we have been in this situation MANY times and that I really do know what is best for her at that point in time. Don’t get me wrong….as I have stated, we go to the doctor OFTEN, and I have nothing but respect for the medical professionals we work with regularly, but our last 2 trips to Blank I won’t ever forget.


The MRI was expected to give us more information on Bridget’s deteriorating hips.  I had done some research prior to the appointment and knew that other Sanfilippo children struggled with hip dysplasia and weakened bones, so that would make sense that it would be happening to Bridget and attributing to her increase in falls and struggles to get seated comfortably.  There are many mornings each week that she wakes up completely UNABLE to physically put weight on her legs, we end up carrying her and lifting her from location to location while getting her dressed and ready for the day. Let me just tell you….attempting to lift a 9-year old’s full body weight to dress them and move from room to room is quite the task. 


Because of all of the observations we have made about Bridget, the pediatrician calling us in to do an x-ray with them, and then getting an MRI for the orthopedic doctor (although we ended up being at the hospital from 10:45-5:00 to complete it), we were hopeful to receive some sort of results or idea of how to assist Bridget in her latest regression. 


The very next day we were scheduled for more scans before visiting the orthopedic doctor. I was even told beforehand that we needed a longer time slot due to Bridget’s more extensive issues. When we showed up to the appointment I was less than thrilled. Michael and I are incredibly involved with Bridget’s health. I feel like we are always on top of things, and very careful with her condition. So when I walked into the appointment and this doctor told me things about Bridget that were not accurate, I immediately felt like a deflated balloon. There is nothing worse than feeling like you aren’t being heard. It’s even worse that Bridget doesn’t have her own voice, and I felt like I was letting her down by not being heard in order to help her. At one point, the doctor said that Bridget “did not have hip dysplasia”. When I told her that was the main reason we were there, along with major right hip issues, and more frequent falls, the doctor left to review information from Bridget’s charts again. After about 15 minutes, the doctor returned and stated that she did in fact have hip dysplasia, but that she appeared to walk fine and did not seem to have much difficulty in that area, or have any pain. It was at that moment that I knew we had run into a brick wall, and it was time for us to leave. As I said before, I was very hopeful about being able to gain some sort of knowledge or assistance from this appointment. Instead, we will just continue to try to “game plan” at home, and also with Bridget’s team from school, about the best ways to keep Bridget comfortable and safe as long as we can.


I hope that I don’t sound awful for complaining about our most recent medical adventure, I just know as a parent of a special needs child, how critical EVERY appointment is. We don’t have time to waste on a doctor who isn’t willing to spend the time to hear us out. This experience did however prove to me how much of a powerhouse advocate I can be though. I have found throughout the years, that I now know how to assert myself when it comes to Bridget, and be able to voice my concerns, and to know which doctors are going to be helpful, and when it is time to walk away and search for other helpful options. 


I just hate that Bridget is in this crossfire every time. I keep going back to the fact that she doesn’t deserve this. She doesn’t deserve the daily pain and frustrations of all of her falls, or her difficulty to eat, lost voice, the weakening muscles and bones, and the barrage of appointments. Even though we hit this bump in the road, we won’t quit fighting for her and searching for ways to keep her safe and comfortable. 


As I look ahead to the remainder of this month and next, we have a couple big things coming up. At the end of this month we will be going to ChildServe to try to find a safer sleeping arrangement. Currently, she frequently falls from bed hitting her head and other body parts. Because we cannot keep a helmet on her while sleeping, we are searching for an option that would keep her enclosed safely in bed that would prevent for falls and injuries. 


Following that appointment, we will have a pre-op physical for her g-tube surgery in February. I know this is something we are becoming quite anxious about. I am not exactly sure how much this will impact our every day life, but I am already anticipating a huge learning curve. 


We do want to say thank you to those of you who have reached out with kind words, cards, and gestures as we get prepared for her surgery February 17th. It is helpful knowing that there are so many people praying for Bridget and our family. I know I might not say those words enough if you see me out of the house or at work, but we thank you and appreciate it more than you can imagine.

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