Hospital life : Does my child need a device? “Our gastrostomy case” Part 2


Last time, I told you about how difficult it was for me to consent to a gastrostomy operation for my son. He had been having difficulty feeding and things reached a climax with him becoming averse to all things food. It was clear that the way for him to proceed was to get help with his feeding. The doctors wanted him to have a gastrostomy but I was becoming more hesitant by the day. If you click here you will read all about it to help you catch up with the rest of us.

Thanks for coming back this week. As promised, I feel that I am not alone in the world of indecision. Unfortunately, I could not help the feelings deep within which were stopping me from simply signing the forms for him to have the operation. Here are some of the things that bothered me :

  1. The Social aspect of having the device. I cannot help my feelings about the social aspect of having a gastrostomy or any other device for that matter. Sadly and a bit embarrassingly, this factor has more to do with me. You see, without wanting to be righteous, I was worried about how my son will come to be viewed by friends and family. All the people telling me that it did not matter had no children with gastrostomy devices or any issues whatsoever so how on earth could they understand my embarrassment. If you feel this way, please do not be too hard on yourself. You are not wicked or selfish. You are just simply human. Trust me, no one who signed up for parenthood factored in this scenario. So it is ok to feel worried about it. The truth in reality is that it really does not matter. People do not really care (or may be I should say people are indifferent) about it. Let the focus tilt back to your child. Try not to be distracted from the child. I find this re-focussing to be helpful. It helps us keep in mind what really matters when these kinds of decisions are made.
  2. How will my child blend in? This was also a worry for me. How my son will blend in with other children. Will he be treated differently? Will it be pulled at by the other kids at school? Will he be bullied? All these thoughts are normal. After all you are the parent and we all know how it is to have anything different at school and be picked on by others. The good news about the gastrostomy or any device is that it is medical and people tend to be very sympathetic and helpful about these things in reality. The teachers will always be around to look after your child when the time comes. Once again, staying focused on the outcome for your child will be the guiding and refocusing tool for your emotions.
  3. How are other children coping with the device? This was a question that kept plaguing me. I was very curious about the future outcomes for real children. I know you might wonder what that means. You see, every time doctors tell me about a desirable course of action for my son I can’t help but feel that those are the textbook kids in thick medical textbooks. I personally feel more reassured when I can see or hear from real people living out those courses of action. For example those living with the device. While it is not always possible to meet other parents and children, I avail myself of this opportunity where possible. I immediately started asking other parents and reading online forums which were filled with real feedback from parents. Everyone seemed to say their children’s outcomes improved drastically after having the device fitted. It was reassuring to know that the device delivered on its promise.
  4. Was it really easier to use? You know how they say if it is too good to be true… then maybe it is? Well, this was my new fear. It was so emotionally exhausting. It just felt like each time I conquered one fear, a new one came up. This was easy to solve. I simply started interviewing parents. One lovely thing about parents with sick children is how helpful they tend to be. Many parents I contacted shared their experiences with me. I was looking for information about how they as parents felt in terms of the difficulty or ease of use of the device. I found consistent and encouraging information in favour of accepting this device.
  5. Other general worries and questions. My last thing to do was to ask as many questions as possible before arriving at my decision. This is one of the best things you can do to put your mind at rest. The doctors and health professionals were always on hand to answer my questions.

So you see, having worries about accepting a device for your child is not new and you are not alone. You need not worry alone. It may not even be a device you are worrying about accepting for your child. It may be anything else. As long as it is a decision regarding your child, it can be draining. We all worry about getting things wrong. It would be easier if parenting came with a hand book. I think the key things that work the most when you reach this type of decision dilemma for your child is

  1. Find out as much as you can about the issue. Remember that knowledge is power.
  2. Write down your questions as they arise.
  3. Ask questions wisely- make sure your questions are directed to the appropriate person on people.
  4. Don’t be too hard on yourself especially when you start to get emotional and sentimental. You are only human.
  5. Keep your focus on what is best for your child. It helps to curb your emotions regarding the issue.

 

After all the points I noted above, I was still unable to sign the consent forms. I ended up doing something extreme to help me decide. If you join me again next time, I will tell you all about it. Thanks for reading.

In the meantime, if you enjoyed this article, then you are likely to also enjoy others in the series.

Photo credit: Pixabay