I promised last time to tell you all about the drastic step I took to help me finally decide whether or not to accept the gastrostomy device. Thank you for following the story right from the first part. Prior to the gastrostomy tube, my boy had a nasogastric tube fitted (It is that tube that goes from your nose into your stomach). It was a traumatic device to even insert. He seemed to pull it out nearly every hour. I also had to go back to the hospital every now and then to have it reinserted. It got to a point where I got trained to insert it at home. As a mum, that was a heartbreaking and traumatising thing to have to do to my child. Having a gastrostomy meant that this activity will become history in our home.
Despite all the reasons in favour of accepting the gastrostomy device for my son I still did not want to consent to it. I even told you all about the feelings of worry I secretly nursed. I talked myself out of them one by one but still, I was hesitant. What was holding me back? I was so unsettled. It was fear! I knew I hated admitting it but it was simply fear! The fears were many… The fear that perhaps they were being too hasty… The feeling that it did not feel right that my son was to be fed through a hole in his stomach… The fear that he might react badly to having a foreign device sitting in his body.
I was drowning in the sea of fear mixed with worry. “Perhaps he needed more time”, i thought. Having spoken with many parents, I knew it was not a wrong decision to make…but it was so hard to sign!… They had sworn by it. They testified to the improvement in the quality of life being experienced by their children post gastrostomy. They talked about how much easier it was. “How can it be easier to put a hole in a child’s stomach?”, I thought, “what if it got infected?”, I wondered, “it is a hole after all”. I could feel myself getting traumatised by the idea of the hole in the stomach. “Surely the nasogastric tube was better! No surgery was required and I could do it – albeit amidst horrible screams as many times as required”.
One fateful evening while Fred was admitted into hospital I decided to walk in the shoes for that evening. It was just a thought… a scary one. (The fact that I considered it scary bothered me because it was something my son had to endure nearly on a daily basis, and worse still it dawned on me in that moment that although the gastrostomy could save him from enduring all the pain, I was the only one preventing this respite).
The resolve became stronger…I had to walk in his shoes! I called on the nurses and looking intently at them (secretly hoping that my request will not sound stupid enough to be discarded immediately), I requested for the nasogastric tube be inserted in my nose! I could see the look of pity in the eyes of the nurse-in-charge as she considered my request. She looked at me knowingly like she understood my dilemma. Then smiled at me and granted my request. As she walked away, she gave me a pat on the back and told me it was going to be arranged. “Get ready for it in an hour”, she said, “I wish you all the best of luck, because you’re going to need it!”.
Surely it was not going to be a herculean task after all my son went through it every single day. I felt the nurse was being a bit dramatic. “Luck? , grrrrrrrr!”, I blew a raspberry. I began to feel quite excited as the hour approached. The prospect of experiencing what my son was going through made me happy because then at least I could now know for sure what all the fuss was about having a gastrostomy instead of the non-operation requiring nasogastric tube which i could insert for him as many times as he needed it.
Finally the time arrived and I sat happily in the treatment room. About five nurses accompanied the nurse in charge. I wondered what all of them come from for. They all looked intimidating as the approached. Wearing sullen looks that seemed to say: are you sure you know what you’re about to do? I ignored their looks and focussed on the task at hand. I was told that all the nurses were there to restrain during me the process. “Fair enough”, I thought. I shrugged my shoulders in a away that meant “well, you have to do what you have to do!”.
Then it began…
The nurses held me, each nurse holding a limb. The last one held my head down. And the nurse in charge announced that she was starting. She brought out a massive tube. In that moment, it dawned on me that she had to bring a tube that was for adults. Not my son’s little tube. I bet it looked to me as it would have looked to my son. I was in horror as she approached with this tube looking at her each time.
I imagined this was my son’s horror too every time I held him down and came at him with that tube. Then suddenly she started to inserted you down my right nose. It was okay to start with “that’s easy”, I thought. Suddenly it hit me right behind my nostril before my throat. I felt like I was going to die. I couldn’t breathe. I began to struggle and kick. Then the restrainers took over. I wanted to run away but they held me down as per my instruction (I remembered telling them not to let me go at any point no matter how I struggled because I had to have the tube all the way down like my son. Perhaps I should have followed the look in their eyes that said “no way you don’t mean that!”).
Well the deed was being done now and there was no going back. The tube carried on going down… down…scraping my throat, my oesophagus, I could feel it tore its way down into what i thought was my bowel… my soul even! It was the most horrendous feeling. The pain I began to feel was mixed with the discomfort of having the strange object literally blocking my nose. All I wanted was to yank it out. I began to see why my son was constantly picking at the tube each time it was in his nose. I could then why he hated it so much. Why he cried every single time. Why his screams were mixed with horror and pain. Why there was no way anyone could get used to this. How unfair it all was that a little boy had to endure this every time just to feed. I was the one person in the world right now who could save him from this pain by accepting the device.
I began to cry…
The floodgates seemed to pour out. I was distraught. The nurses were clapping by now. I pulled out the tube before they could stick it down my face. I could not bear it for a second longer. I was so sore from what seemed to be an ordeal. I literally yanked the tube from my nose, ran to the sink, and spat blood from where tube had scrapped through my whole being.
News travelled fast on our ward. Before long many of the nurses came to me in the room to see how I was doing. Some said I was brave. But that was not the intention of the exercise. It was not done to show that I was brave. It was just a walk in my little boy’s shoes to help me see things through his eyes.. All I wanted now was to protect my son. All I wanted was to save him from any pain that was avoidable.
I looked at him in the cot where he lay with the tube in his nose. I hoped that he would forgive me for ever declining the gastrostomy in the first place. I was so sorry that I ever hesitated. I was sorry that I had delayed signing that consent form. I wanted him to have the operation immediately. It became an easy decision. It was sad because I had to experience it first before reaching this conclusion.
I worried about other procedures I had declined in the past and what they could have meant for him. I could not experience everything he was going through like I just did. I resolved to always see things through his own eyes and not through mine in future regarding any procedure or decision that concerned him.
I signed the consent form later that day and Fred had the procedure done shortly afterwards. Today, the rest is history. His quality of life especially from the trauma point of view has improved drastically. We now can intervene on time in terms of giving him fluids and specialist liquids when he needs them at any time. He does not have to be pressured to feed by mouth any more. He is hydrated always and so his health does not deteriorate as often as it used to.
I learnt the importance of keeping the focus on my son when any decision was to be made regarding any aspect of his welfare. I believe that this can apply to any child too (healthy or unwell). For those of us with poorly children, we are privileged in a way because these decisions although overwhelming can be reached with the guidance of the health professionals taking care of your child (but only if we let them).
I do not mean in any way that the gastrostomy tube is the best form of feeding for children who are unable to feed themselves of feeding enough. But perhaps if you are in a dilemma regarding choosing a device for your child as I was, you will find it helpful to know that you are not alone. You are not a bad person for contemplating declining device. You are only human and should not be too hard on yourself. It is my hope that your decisions get easier along the way you have found your life to be…
Thank you for reading. If you enjoyed this article you may also enjoy others in this series.
Photo credit: Pixabay