Speak up: advocate for your child

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One lesson I learned very early in our journey with Faith’s  diagnosis was that I must advocate for my child.  As a parent, you are their voice.  Your child depends solely on you for everything.  That is such an enormous responsibility.  It can be difficult to speak up when you are talking with surgeons, specialist, and other medical staff that have more knowledge than you.  However, you know your child best.

 

Faith being taken back for her colonectomy and ileostomy. 

Facing Surgery

Our daughter, Faith, was scheduled for surgery to place her ostomy after she was diagnosed with Hirschsprung’s Disease.  There is probably not much scarier than your infant having surgery.  You are placing your child in someone else’s hands.  All you can do is pray that everything turns out fine.

A few hours after the surgery began, we got a call from the surgical nurse.  It turned out Faith’s Hirschsprung’s Disease was more extensive than expected.  Cells were missing throughout her entire colon and part of her small intestine.  The surgeon had decided to not place her ostomy.  Instead, her preformed a biopsy to find the transition zone (the point where the good intestines meet the bad).   Even though we did not get the expected outcome, Faith did fine. We were given the normal precautions for post surgery including she may run a fever for up to 48 hours.

For the majority of the 48 hours after surgery Faith seemed fine.  She was a little grumpy, but that was to be expected.  Faith’s surgery was on a Wednesday morning. But Friday afternoon, Faith started running a fever. The nurse gave her Motrin but it wouldn’t go away.  Now we were starting to get concerned. Time to start to advocate for my baby!

Advocates for Faith

Here is where the Momma Bear really came out. It still makes me angry when I think about what happened.
Like I said, Faith developed a fever and she was given Motrin. I pointed out to her nurse that it had been longer than 48 hours since she had her surgery, and she should not have a fever. She agreed, and contacted the attending surgeon on call that evening.

The surgeon did not come and see about Faith. He did nothing. The nurse took her temperature again and she still had a fever. She called the doctor again. And again he did not come. Instead, he told the nurse that he would order some blood work in the morning.

In addition to her fever, Faith was a little lethargic. Not overwhelmingly, but just enough for us to notice she wasn’t herself. So by this time I am angry. When the nurse came in for the third time to take her temperature and it was still there, I “politely” told her that the doctor had as long as it took me to put my shoes on and unplug her from her monitors to get to her room. Otherwise, I was taking her downstairs to the ER to be seen.

Standing up to Medical Professionals

The nurse, who was wonderful, calmly asked me not to do that, and said that I could call 1111 from the room phone and it would call the emergency response team if I felt it was necessary. I immediately got up and called that number. When someone answered I told them our room number and advised them that Faith was breathing, and of the situation. The team was there within 3 minutes. Two minutes after that the on-call doctor showed up, cowering in the back. The doctor in charge of the response team ordered an X-ray to see what was going on. I told him that the attending doctor ordered blood work to be done in the morning, and his response was he didn’t know what that would do.

After the response team left, the attending surgeon came in the room. I honestly cannot recall everything that transpired. But I do remember being irate and yelling at him about his incompetence and blowing us off. And I definitely remember him raising his voice at me. Up to now, it had been me that turned into Momma bear. My husband had kept his cool. But the term poppa bear, would not adequately describe my husband at this point. Now it was his turn to be the advocate.

He not only made that doctor apologize, but did it in a way that I KNOW he felt about two feet tall. The doctor had a nerve to say he raised his voice at me because I was yelling. Really?! I reminded him that This was MY daughter we are talking about! I am the concerned, scared parent. And he is the  professional. So regardless, he is to keep his cool. My husband quietly told him that he should be glad that he prayed that day. Because someone would have been calling 1111 for the emergency response team for him! Needless to say, he left the room with his tail between his legs.

We Got Results

Faith had the X-ray and it showed that she had a perforated bowel. The doctor scheduled her for an emergency surgery first thing in the morning. Her original surgeon was out of town. So, now she was having the surgery done first thing on a Saturday morning by a surgeon we only met briefly before the procedure. We were a nervous wreck. After what seemed like a lifetime, the surgeon came out and told us that she did wonderful through the procedure. We were beyond 

The experience with the attending was horrific. The word spread like wildfire on the floor about what happened among the nurses and the aides. Many of them came by to check on us and to see how we were doing. They offered their apologies about what happened and to also let us know we had their support. We had some of the best nurses ever during our stay at Vanderbilt. I will share more about that at another time.
I seriously thought of filing a formal complaint about the situation with the doctor. However, the hospital administrator paid a visit to us (I later found out that we were the first family to ever call the emergency response team). My husband and I expressed all of our concerns and also praised the nursing staff for all they had done to help us during our stay. I wanted the doctor reprimanded for his lackadaisical attitude. But I truly believe he will never forget that night.
At the end of the day, the most important person was Faith and her well-being. Faith was recovering and doing well.

Helping Others

About a year later, Faith was back in the hospital again for about a week with Rotavirus. When we got to the room the nurse started going over everything. Where things were located, the menu to order food, how the TV worked, etc.

Then she mentioned that parents have the right to call 1111 if they ever feel their child is in an emergency situation. Signs were posted around the room with the number and it was listed in the manual on the nightstand. I briefly mentioned to her that we were very familiar with calling them, because we had done it before, but I didn’t remember the posters being in the room. She told us that the posters were fairly new.

I don’t know for certain that our incident caused the change at the hospital, but I like to think that it did. Remember how I said you don’t know why you go through some storms in life? Maybe part of the reason we went through this storm was for those signs to be posted. Hopefully, no other parent will feel ignored.

 

2 thoughts on “Speak up: advocate for your child

  1. I didn’t know your story. So many parents will be blessed by it because they may not know that they have to be their child’s biggest advocate. Thank you for sharing. #mommabearhearherroar

    1. Hi Nikki! Thanks for taking the time to read it. Yes, as a parent we have to advocate for our children. My purpose for sharing is to let others know this.

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