As of 10pm last Thursday night we were convinced we’d be heading to the hospital on Friday with Jack to have an NG tube placed. We were once again struggling with getting him to take his medications. We tried everything we could think of, including holding him down and trying to force him to swallow. It was fucking terrible!! The oncologist talked to Jack on the phone and sounded defeated, as well. Jack talked to his dad on the phone, too. We were all very, very depressed.
We gave up and went to bed, resigned. I laid down with Jack and said if he’d try again, I’d give him any toy he wanted. He declined. Then, about 10 minutes later, he said he’d changed his mind about the tube and wanted to try again but go back to using the nutella. We got up and went to town on the nutella. He struggled to get it down but was finally able to after 10-15 minutes and we all breathed a HUGE sigh of relief. The struggle was over for the night!
Nutella is not a great solution – since it contains dairy – but it’s the only solution we have at the moment. I let Jack know that he could indeed pick any toy he wanted but he needed to remember that he has to keep trying and I can’t keep buying him toys every time he has to take meds. He understood.
Jack got his toy on Friday. He picked a $10 pack of zombie action figures – not the $100 lego set I was worried about. Maybe I CAN afford to buy him something every time he needs to take a pill.
Pill taking has been relatively smooth since then. We were all relieved to have a fairly easy weekend. We got the special pill-taking cup and some mini m&ms to try, but that was a complete disaster. So chewing pills in nutella it is!
Here we are at Monday again, though, with the whole eight pills that need to be taken tonight. We’re meeting with the hospital’s child life specialist this afternoon to see if she can work some magic and prevent any further issues from developing. Maybe she can teach Jack how to swallow pills – I’m at a complete loss as to how to do that! My level of confidence on this has seriously sunk and I’m fighting not to feel completely defeated about it all. I am (understandably, I think) worried that the nutella will stop working or prevent Jack from receiving the full benefit of his medications. The case manager was nice enough to tell me about a study that said that kids who don’t consistently take their maintenance meds have a 42% chance of relapse. That didn’t help me any.
Please wish us luck. We need it.