Making Decisions
I know, I haven’t written anything in a while! Between Jayden’s wild behavior, his lack of sleeping, driving him around, and my dissertation, I have been nonstop around the clock! Lol.
However, today I wanted to talk about making decisions. Decisions that could impact your child’s life forever or even end their lives if it is the wrong decision. Lord knows I have been in that situation more times than I would like to remember! Each situation was difficult in their own ways but making the tough life or death decisions that I have had to make was, of course, the most difficult. You never really know if you are making the right decision until you see the outcome. However, that outcome is not always right in front of you, or it could be years away. So how do you ever really know if you are doing the right thing? Well, to be honest, you don’t. You just do the best you know how to do and hope it was the right decision. You also can’t blame yourself when things go wrong because at the time you make the decision, you did the best you could with the information you had!
Recently, I have had a few people reach out to me about their specific situations to ask what I would do if it were Jayden. I do not mind helping or giving advice to anyone that asks me! Seriously, I don’t! However, when you have kiddos like Jayden who have such complicated backgrounds, it is so hard to make even the simplest decision when it comes to medical care. I feel like I always have to provide the disclaimer, “Unless I spend hours reading your child’s medical reports, I can’t really give you advice on what I would do because you may have forgotten to tell me something that would completely change my opinion.”
When dealing with these major medical decisions, we go through so many things. Then we start to question everything. Do I go against the doctor because I know my child better than they do? Do I just go with the flow because the doctor knows best? The doctor has my child’s best interest in mind, right? Did the doctor really sit down and think about this before telling me to go with one treatment over the other or are they going with the typical one size fits all method? Did they imagine my child was theirs and plan the best route of treatment based on that? If my child dies due to this decision, is it going to have any impact on the doctor’s life other than losing a patient?
I have gone through all these questions and so many more with each major decision I have had to make with Jayden. I think it is okay to question things. In fact, I think it is amazing to question things because if you don’t, who is going to? People always say that the parents/caregivers are the ones who know their child best, and they are correct! No, you may not have a medical degree, but there is something inside of us that knows when the situation doesn’t feel right! Now don’t get me wrong, some doctors I have worked with have been absolutely amazing! The answers to many of those questions have been “yes” when working with them. However, that is not always the case.
I have never been a parent to just go with the flow regarding anything. This is especially true when dealing with important medical situations. I can’t tell you how many times I have gone up against doctors. I have yelled, cried, cussed, and presented the information that I have researched just to get my point across. Emergency situations are the worst because everything is moving so quickly, and it has to, but sometimes you just have to step in and take charge because you know something isn’t right. If you don’t, well, you know what the outcome could be.
Like the time they almost overdosed him on medication, and we caught it before it was administered even though we had to fight to get them to stop and recheck it. Or the time the doctor wanted to push specific medications that I was completely against, so I did what I had to do in order to stop it. Or the time they sedated him and had him on a breathing machine, and I knew with every being of my body that everything needed to be turned off, so he could wake up! Man, that doctor did not believe me! He thought I was mental, but guess what, 10 minutes after they listened to me and stopped everything Jayden was wide awake and ready to go lol.
Of course, situations don’t always turn out the way you hoped they would, but sometimes you do have to put yourself out there to make sure your child is getting the best care possible. Of course, I am not saying to make the doctor’s life hell by being a crazy person (unless you have to be), but I am saying to question things. Ask questions until you have no more to ask. If you have run out of time, make another appointment to finish your questions. Research on your own. Read studies done on the specific medication, procedure, or surgery the doctor is suggesting. Ask the doctor how many of those specific surgeries have they successfully completed. Ask how many of their patients have had severe complications or died as a result of the surgery.
If you find that the doctor is not listening to you or they do not want to give you the reasonable amount of time you need to understand what is going on, fire them. Find another doctor who is willing to listen to you! I have a friend right now who has changed her son’s gastro doctor over 52 times. That is right. She took him to 52 gastro doctors in Ohio, West Virginia, and Pennsylvania before she found the one who finally listened and believed her about her son’s problems. And guess what, her son’s life has been changed in an amazing way because his mom kept going until she found someone who would listen to what she knew was right!
Again, I made this post due to the people I have been talking to recently (they know I am writing this lol). I guess I just wanted to say, never think you are crazy. Never stop questioning things when you know something is just not right. No matter how crazy those around you (even family in some cases) make you feel, keep doing the best you can for your child. Make a PowerPoint presentation of all the information you have collected on your child and the current research and take it to that 52nd gastro doctor as my friend did! Lol. If you need help locating information or interpreting it, I am here to help you if I can! However, in the end, you and your family are the only ones who can make the decision.