Last Thursday we arranged for an emergency appointment to have lung function tests and see his doctor. Dan and I were both working, so Dan’s Dad kindly offered to pick Isaac up from home and drive him into Dan, who would take him in to clinic. Only Isaac refused to open his bedroom door, insisting that he felt fine and that he could wait a week until his full annual review appointment instead. I went home mad, knowing his team had gone out of their way to squeeze him into clinic, and worse, that if he leaves it too long, he risks not only getting worse, but also delaying surgery as they won’t anaesthetise him if he’s that unwell. Despite his pleading that he felt better, he then coughed all night long.
Friday his consultant phoned to speak to him (this never happens) and explained the same thing... that if he needs IVs, he needs them ASAP to have any chance of not delaying the op that he so badly needs. He grumbled a bit, but then conceded that his decision to delay might not have been the right one. As it was then too late to take him in, we’ve started extra orals instead in the hope they tide him over to this week. If he can make it to Thursday, we can kick off IVs while we’re in for his annual review. This would give him 6 days of IVs pre-op and (at least) 8 post-op (post-op infection is a risk, so as long as it takes). If he gets any worse before Thursday, we’ll be in sooner. We’ve been warned already that they may want to keep him in a few days, considering his chest and the significant surgery, but they are balancing up that decision with the fact that they have flu on the wards right now, and that is the last thing he needs.
More than the delay, the not knowing just how unwell his lungs are right now and the worry about delaying the op, it’s that he is increasingly taking the reins in terms of how and when he wants treatment, and not always for the right reasons; Refusing to go on Thursday was much more about the fact that it is half term holidays and he wanted to stay home and play PS4 than because he really didn’t want to start IVs. Had it been a school day, he would have happily taken the morning off school to go.
For fifteen years now we have put his health above everything, and knowing that he might not do the same is heartbreaking. He’s going to make a lot of wrong decisions in the next few years I fear, and sitting back to watch that, as a parent, is really hard. When he was grumpy with me for being mad with him (after refusing to go to hospital) I told him that unfortunately for him, I will always love him way more than he can ever hate me for wanting him to to stay well. So ner ner, ner, ner ner (because we are that childish) x
Isaac, 2019.
