For the First Time, Accessing My Son’s Port Causes Him Anxiety
A port dysfunction led to a trip to the ER, and more challenges later
A few weeks ago, my 4-year-old son, Cayden, had a rare occurrence in which the implanted port in his chest stopped working. It was a scary situation and the first time it had ever happened. The port is necessary because Cayden receives biweekly enzyme replacement infusions of Nexviazyme (avalglucosidase alfa) to treat his infantile-onset Pompe disease.
Although we got his port working again after a trip to the emergency room, things haven’t been the same since. He now has extreme anxiety and freaks out when his nurse tries to access his port for the infusions. Cayden was fine with his port being accessed before and would hardly even flinch.
It saddens me to see him so upset. He’s had the same port since he was just 8 weeks old. Initially, he would get a little upset when he’d have it accessed, but after a few months, he did fine until recently.
Trying everything to calm him
I try to comfort Cayden while he’s having his port accessed. I’ve tried talking to him and saying motivational things, letting him watch a video on my phone, and even bribing him with lollipops and his favorite toys. Unfortunately, nothing seems to do the trick.
Another idea I had was buying him a pretend doctor’s kit in hopes that it would make him feel more comfortable. It came with a fake shot, which he enjoys using. I tell him that after he gets his port accessed, he can give his nurse and me a shot so that he isn’t the only one getting stuck with a needle that day. He enjoys giving us the fake shot, but he’s just too smart and realizes that it’s not the same thing he’s dealing with.
Cayden plays with his new doctor’s kit. (Photo by Keara Engle)
It’s important for Cayden to remain as still as possible while the nurse tries to access his port. If he moves, she may miss, and we’ll have to do it again. This is exactly what we are trying to prevent, because it will only cause more anxiety. Thankfully, his home infusion nurse is great at getting his port accessed successfully despite him squirming around a bit.
The way he’s been acting reminds me of how he behaves when he has to get blood drawn for lab work. I can’t blame him, but I wish I knew what to do to help. I feel as if everything we’ve tried to get him to calm down is just a big fail.
I know I’m not the only parent in this situation. There have been discussions in Facebook support groups about children with Pompe disease having a difficult time having their ports accessed. It makes me feel a little better knowing that we aren’t the only family dealing with this.
Hopefully, as time goes by, we won’t have more big issues with Cayden’s port, or at least not for a long time. I know this may not be the case, but one can only be hopeful. He’s dealt with so much in his short lifetime, and the last thing he needs is to deal with anxiety about his port!
Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
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