It’s A Struggle

I’ve stared at this blank box for hours now. It’s not been a productive day.

We’re hanging in there with administering Jack’s medications. He’s developed some sort of psychological issue with them – he is afraid and says he “can’t” swallow. Up until now, he’d been taking pills in applesauce (or yogurt occasionally). He absolutely won’t touch applesauce now.

It took over two hours to get him to take all of his pills on Monday of last week.

And, to be clear, it’s not that he’s refused to try to take the pills – it’s more that he’s paralyzed with anxiety about it. We’ve tried to talk it through but have gotten nowhere. He’ll sit there with it all in his mouth – as he did for about an hour last week – with a panicked look on his face while the pill dissolves and still, he never swallows. It’s no better if I crush the pill. He knows what he is taking and his mind just won’t let his body comply.

We’re getting by right now with Jack chewing the pills in peanut butter. I don’t know why this works – maybe a texture thing? This is hardest on Mondays because he has to take eight pills before bed on an empty (as much as possible) stomach. Six of those pills are just one medicine, so it can’t even be spread out…but thankfully those six pills are only needed once a week.

I’m worried that the peanut butter isn’t going to be a sustainable method of medication delivery. While he was enthusiastic with it at first, each day since has been more difficult. Jack shudders, clears his throat and gulps a lot before taking his meds. We always have a glass of water handy. Other options are few and far between – the medication can’t be taken with dairy or citrus or a meal.

I spoke with our case manager and she had a few suggestions. We could try a special cup to aid in pill swallowing or a liquid to help the pills go down. These options don’t sound likely to work but Jack is interested in the cup. The oncology child life specialist is also available to help practice taking pills with Jack.

The case manager also asked the department’s social worker to give me a call and offer her assistance. Unfortunately, while this woman wants very much to be helpful, she is the least helpful person! She just doesn’t seem to be all there. (Case in point: she accidentally broke the news to David and Joe that Jack had cancer – before things were confirmed by the doctors.) This time she recommended a discipline technique. When I explained that this wasn’t about Jack not behaving and that even if it was, there’s no way to physically make him swallow so any disciplinary threats would just end up with him losing out on things and still not having swallowed the pills, she had no other ideas and said she hoped the child life specialist could help.

We hung up and I actually felt worse – like I really am all alone in figuring this out. Not helpful!

Even if this was a behavioral problem rather than a psychological one, Jack has my stubborn streak. I once sat at a table ALL DAY LONG UNTIL DARK rather than eat a bowl of soup that I didn’t want. Pressure tends to make me – and Jack – even less likely to comply. I can tell you with absolute certainty that I would have sat at that table for days and I would have starved to death before eating that soup. Apparently my personal freedom is just that important to me.

Or I just have a random character flaw. Whatever.

So anyway, we’re getting through with the peanut butter but who knows how long it will last. The cup is coming and the appointment with the child life specialist is scheduled. I also have a book on its way that talks about kids taking medicine – I’m hoping it will have something that I haven’t yet come up with to get through to Jack.

Sometimes it’s hard not to think that the universe is purposely fucking with us.

And here’s the part where I throw in a music video of a song with apt lyrics (you’ll forgive me, right?).

5 thoughts on “It’s A Struggle”

  1. I know the crushing doesn’t always help…but maybe if you crushed it in soy or rice ice cream? In a flavor that Jack gets to pick?
    I am so sorry things are so difficult. I wish I could help more.

  2. First and foremost, I’m sorry. I can imagine how hard this is for all of you. Also, I hate hospital staff who are unhelpful (or actually make matters worse). Have you met with anyone from Occupational Therapy at all? Maybe they would have some ideas for you. Also, do all of these meds have to be taken by mouth or can any of them be given IV through Jack’s CVL until the swallowing is resolved? This is obviously not a long-term solution, if a solution at all. Again, I’m sorry things are challenging. I have a child with a serious, chronic medical condition who requires daily IV meds and nutrition and it’s a tough road, Wishing you all good things.

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