Trusting Yourself as a Mother
The news of the day is that we are going to see a new doctor, a Nephrologist this time (assuming they ever call back). No one seems especially concerned about Lizzie’s high blood pressure (except for me, of course) but they all agree that it is reasonable for us to see a nephrologist if we want too.
Reasonable…. yeah, I’d say it’s reasonable. I think it’s reasonable for me to want an explanation of why a child that is not even two, has elevated blood pressure at all, much less with a diastolic reading 25 points higher than my 5 year old son! I think we should at least understand why it’s not concerning. You can’t say hmm that’s high, and then turn around the next week and say, decided it’s nothing to worry about. Easy to say if you’re not the one actually having to worry about it.
Don’t get me wrong, I think it is great that they are not anticipating it will be a problem. That’s great news. The problems is that I just don’t get it, and no one has given me an explanation good enough to diminish MY worry. Our list of “weird & unexplained” things going on with Lizzie just gets longer and longer. Every time we add something to the list, my worry goes up. I just feel like there have to be more answers out there.
So far, she has recurrent UTIs, the enlarged bladder, the failed reimplant, the oddly shaped kidneys, the spleen “bending” one kidney, recurrent low grade fevers, strange poo, complaints that her bottom is hurting, and now high blood pressure. None of which have been truly explained. When and where do you draw the proverbial line? At what point is “we just don’t know” not good enough anymore?
I was so naive in the beginning. I believed that the doctor’s had all the answers. I also believed that when they didn’t, it would be their quest to find them. Man, have I learned the hard way! I’ve discovered that my job as mom includes so much more. I am a mom, a research specialist, an advocate, and a fighter for my daughter’s health, sometimes along with her doctors and sometimes despite them.
I just have this overwhelming feeling that something is not right, and we are just not seeing it. The problem is that I just can’t figure out which part of me is feeling that way. Am I being that crazy, overprotective mom, or am I being an advocate for my child? I never imagined how close the two could come. I feel pretty strongly about my role of advocate, but I have to know that I am advocating for the right thing. Sometimes the line is right there, and it’s easy to know when to cross. For example, when they wanted to give my 5 month old baby the drug Cipro, it was easy for me to jump across. This was not a drug I wanted my infant to take, so I knew I was doing what was best for my child by insisting on another drug that we had used successfully in the past. Unfortunately, it’s not always that easy.
So here we are again. I don’t feel quite right about everything that is going on with Lizzie, but I can’t explain it. I just feel that overwhelming, nervous, pit-of-your-stomach funk that goes along with all the medical mumbo-jumbo. I tend to go with that feeling, but man that is a lot of pressure. To make such big decisions based on my meager research (in comparison to a doctor) and my momma gut. Am I justified in my concern, or am I just paranoid based on past experiences? Both of her current doctors offered a Nephrology referral, but neither think we need it. I, on the other hand, feel like it’s the logical next step – and an important one at that. If we have any question about her bp now, that puts her at a much higher risk later. How am I the only one that sees that?
I trust that her doctor’s have her best interest in mind. I really do believe that, but I have become more of a realist. I realize that they see hundreds of patients, and that they don’t have all the answers. They also don’t have the time to look for them. I am her mother. My job is to make sure that I am doing everything I can to keep her healthy. So yes, I will take your referral, and I will see one more doctor. Do I believe I will get some new revelation and miriad of answers? No, but if I can get one more peice of the puzzle, then I’ve done my job.
