It's been a rough few days of trying to be an advocate for Joshua. Part of that was with finding a place to stay so I can be close by, the other part of it was fighting with doctors and nurses to make it known that something was not right with my little man and he needed attention.
I have reached a point where I wonder if I am exaggerating my worries about Joshua or if they are really valid. I've been second guessing myself and not wanting to become one of "those" mothers that is never happy with her child's care. (I'm completely satisfied with our care here, I just try to keep on top of it!) I sometimes wonder if I have become too close to his care and am trying to demand things that are not necessarily what is really needed.
For example, I came in this morning and noticed that Joshua's sats were all over the place, his heart rate was elevated, and he was breathing hard. I immediately started flashing back to last Monday morning when he crashed. My mind went to the worst place possible.
After I watched the monitors for a few minutes and things were not calming down, I talked to the doctor about my concerns. He came and checked Joshua out and said that he didn't think it was anything cardiac related. He left the room and I still was not satisfied with that answer and could tell something was off for Joshua.
So, I expressed my concerns to the nurse who then went and talked to the doctor, who then came back in again. Once again, the doctor said, he thought maybe it was a bit of withdrawl and would give him a dose of morphine. I felt better about that.
After the morphine was given, he was still breathing heavy and his heart rate was still up. I asked if they could call cardiology just for my own peace of mind. The doctor said cardiology would be in later today and they would stop by. By this time, I started second guessing myself and my pushy-ness. I started wondering if I was making a mountain out of a mole hill.
Thankfully, the cardiologist stopped in first thing after he got here. He took one listen to Joshua and listened to my concerns and agreed that something was not right. FINALLY, I started feeling like less of a pshycho and was glad that he agreed with me. He ordered a chest x-ray and blood gasses. He validated my feelings and told me that he appreciates a mother who is a bit more on the cautious side and that I am doing a good job.
It was at that point that I realized Satan had snuck in. He is trying to break me down at every angle and make me second guess myself and my instincts. He knows that I don't want to be known as the mom who raises hell for every little thing, and he knows what to do to make me feel that way. I don't ever intend to piss people off, to annoy them to no end, or to hurt feelings, I'm simply a concerned mother who would do ANYTHING to ensure that my medically fragile and unstable child is alright. I know Joshua better than anyone else, and I will fight for what he needs- whether that means a place for me to stay that is close by, pushing for medicine, or fighting for tests to be done to rule things out. I don't want to be "that" mom, but sometimes I have to be.
I'm praying for God to protect my mind- to not allow satan to have that stronghold on me. I'm praying for God to continue to guide me as I nagivate this brand new medical world in which I have no prior experience in. I pray for the wisdom to know what is a true concern and what is not. I'm praying for peace and rest for my weary soul. And I'm praying for all of Joshua's caretakers to understand that I don't push just to be a pain, rather than to understand that I am just a fierce and fiesty mama bear trying to protect her young.
6 comments:
JIll - YOU are Joshua's BEST ADVOCATE. If you feel something is not right your JOB is to speak up and say so. That is a job for any parent - but even more so if a medical issue is involved. When we were in the hospital we had one nurse who would roll her eyes anytime I questioned anything. It finally got to the point I asked her if we had a problem. I finally went to her supervisor and talked about the situation - I told them I did not want someone like that taking care of my child. I did not care how much experience she had - if she had no compassion for "heart moms" and their concerns then she could not be on our team. She was immediately reassigned. I did not feel one ounce of guilt over it.
Shannon Egan
One of the things I learned while David was in the hospital for his extended stay, you as the parent are an equally important part of the team caring for him. It's an equal partnership between you, the doctors, and the nurses. You are so critical to his care because you are the only one who is there with him all the time. Although many of your nurses are familiar with him, and may even know a few of the tricks to calm him, you are the only one who truly knows him, what is normal and not normal. Embrace the fact that your participation in his care is as important as the nurse's and doctor's. You are doing the right thing. Continue to speak up for him. I'll pray for you to have the courage to know when to speak up. Thanks for continuing to update us all!
Jennifer
Jill I wanted to also add that please remember Joshua may be their patient but he is your child. At the end of the day, that is what matters. YOU are at the center of this. You and Joshua. The doctors and/or nurses just come and go - sometimes less than 5 minutes at a time. I am not making light of what the doctors do for our heart kids - but they are not there 24/7/365.
Shannon Egan
Jill...remember what we talked about yesterday...about how the devil always throws in crazy tempting situations and causes you to think negatively and question things? I know that you are doing an amazing job...saw ya first hand. The doctors and nurses, as much as they love and care for Joshua, are not fully invested in the same way you are. They have to care for more than just him and they have other cases, personal things and more to think of. You are his mommy. You know his safe rates and what's normal for him...you said it yesterday...every heart case is different and the doctors do not fully know it all at all times. Follow your heart...(and God never gives you more than you can handle)...hahahah!
Hi Jill,
I'm not sure how I found your blog...probably through another heart mom. I just wanted to let you know that I am praying for your beautiful Joshua. I have been following for a little while, but felt the need to post tonight. I wanted to direct you to a post I wrote on my blog. It is entitled "Be an Advocate" and the address for the entry is http://lukeslegacy.blogspot.com/2010/08/be-advocate.html. See, I am a fellow HLHS mom. Our son, Luke, was born in March 2008 and we lost him in April 2008. Anyway, I felt compelled to write the post for moms like you, who are questioning whether or not you are "that crazy mom". You are NOT crazy, you just love your son and you will do anything to keep him safe. Feel free to contact me if you ever want to talk...prayers for a good night with normal sats and rates.
Bernie Haberman
Collierville, TN
Keep your fists up Momma Bear. No one here is going to think you are crazy and to be honest I would rather be "that" mom than to sit on the sidelines not saying anything.
Our pediatrician once told me when I apologized for what I felt was wasting their time by bringing Logan in when there was nothing wrong. He grabbed my arm and said, "you bring Logan in here ANYTIME. No one here is going to think you are crazy. It is our job to check on him if you feel something isn't right."
Praying for you and Joshua too!!
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