The drains came out today! We now have no wires or tubes and medical people are starting to mention the h- word!
Recovery is going well – I would say slow and steady but it seems we’re actually ‘quicker than average’ and steady, which is even better. We left PICU on Sunday and have been in the HDU bay of the cardiac ward since then. The Jam is no longer constantly monitored and instead has his temperature, blood pressure and oxygen saturation checked every four hours – he’s been hovering in the high 80s but we’ve seen 92% and even a little higher fairly frequently.
He’s been incredibly brave. He still has two drains in his chest to remove the fluid from his lungs, which is common after this operation, but he’s been up and about, carrying the drains around in a little shopping trolley. He’s also demonstrated a return to his usual strong-willed self by refusing to take his medications without bribery, begging and a number of other tricks! The wound itself is looking good and although dressing changes have been rather traumatic, he seems to forgot about them once they’re done much faster than me!
Just a quick post to update those of you following the Jam’s progress. The procedure went well yesterday. It was more complex than usual because his heart is turned over towards the right side of his chest, and the arteries etc that they were working on are underneath it so they had to lift his heart out of the way while he was on bypass. However, the team was expecting this and it all went to plan. He came off the ventilator after a few hours but it’s taken a little longer to stabilise his temperature and blood pressure. It’s all looking good now and they’re hoping to remove one chest drain and some of the lines this afternoon. We’re expecting one more night in PICU then up to the ward tomorrow!
Yesterday we told the Jam about his upcoming operation. I’ve been dreading telling him almost as much as I’m dreading the surgery itself and the long hospital stay afterwards. DH and I have been discussing it for a long time and we agreed to tell him just enough about what will happen to prepare him but then focus on the positive outcomes. He doesn’t need to be worried or scared; that’s our job.
I found a little book called Going to the Hospital in our local library. It’s the story of a little boy who has an ear operation and it describes what happens before and after the procedure clearly without being too frightening (though the Jam, predictably, did not want to look at the picture of the boy having an injection). We read it together and then explained that he would be having an operation too, but on his heart instead of on his ear. We told him that he might feel strange or poorly afterwards but we would be with him and that when he came home he’d have more breath and be able to play for longer in the park. He didn’t actually seem very interested but he has a talent for appearing to be oblivious and then repeating phrases verbatim weeks later. He’s already asked about getting presents for being brave, like the boy in the book!
The other book in the picture is produced by the CHF to help prepare children with CHD for surgery but it’s actually not very applicable to us, as it focuses on a little girl (Violet) who regularly turns blue and has to be hospitalised before her operation. Although this would be ‘normal’ for a child with the Jam’s condition, it’s never happened and he would be more likely to identify with the heart-healthy sister (Rosie) in the story!
This week we gave him a Doc McStuffins game for his LeapPad Ultra (which was his Christmas present). He’s been enjoying playing doctor and making the toys better, both virtually and in his bedroom with his stuffed animals. Hopefully the LeapPad will also help pass the time in hospital while he’s recovering.
I’m sure we’ll have more question over the next couple of days, but I think he’s as prepared as he can be. If only I felt ready…