Communicating

Lennon and McCartney mostly wrote their own songs when they were in The Beatles. Sometimes, though, they would piece together bits that they wrote separately and make a truly Lennon-McCartney song from that. My favourite example of that style is "We Can Work it Out" where John wrote the "life is very short" part and Paul wrote "try to see it my way". This is David writing and the reason I bring Paul and John up is that this post is actually written by us both. I think that this means it will be a mess, but maybe we can work it out. Here's Aly; 

Monday started out with an email from the hospital letting me know that Charlie was scheduled for an abdominal xray at 6am. As soon as I saw the email I called our nurse to find out why. Apparently over the course of the night Charlie's abdomen began to look more distended and blue. Those are the tell tale signs of a bowel perf. The nurse was really concerned at the sudden change in how he looked so she contacted the on call resident and he agreed an xray was needed. The xray showed free air in the bowel which again, is a sign of a perforation. We got to the hospital and met with surgery who were recommending surgery.

Aly likes to write these blogs like a news report and I tend to be more of a magazine piece. However, I will try and adapt. Dr Marvelous weighed in on  surgery's suggestion and  agreed it was the best way forward. He likes a plan. Nobody was saying that this was a new perforation. What they were saying was that the perforation had clearly not healed (or if it had it has re-opened) and that the existing drain was not communicating with the area of leakage. My concern was that I didn't really understand what was so different about this plan compared to the last time we cut him open. So, with apologies to the health care providers out there that surely roll their eyes at amateur explanations like this, his intestines have a hole. They don't know exactly where it is but they do know that they failed to get at it before and it is, therefore, reasonable to assume that they can't get at it again (it's in an area of intestine that is all balled up and sticky). So, instead, they are going to make a cut "upstream" of the hole and take it outside (an enterostomy or ostomy for short). So, anything making its way from the stomach would come out his ostomy rather than out of the perforation and into his abdominal cavity as it had been. Surgery would be performed at the bedside like his previous surgeries. The ostomy is a short term plan that is followed later by a more permanent repair to his intestines when he is old enough to cope with that; some time in late February.

We were of, course, worried sick about his ability to survive surgery and we left the room and went down to the third floor to wait.

At this point, I was supposed to hand over to Aly. However, the day rather took over and she hasn't had the chance. So, this is becoming more one sided than when we started.

Charlie's surgery went well. We were called back up and had a meeting with the surgeon in the play area of the 8th floor that was weirdly comical, given the tension, because we sat down at a tiny table on tiny chairs. We were told that it had gone as planned.

Back at the room, we met the neurology team and they dropped into the conversation that they had no problem with neurosurgery's plan to perform a procedure on Charlie on Thursday. Pardon? What procedure? When? The poor doctors had assumed that we had been told about this plan. Seems that we may have a problem with communication. We quickly got back on track and agreed that we really needed to have a sit down with neurosurgery.

So, we did, and it went really well. It turns out that they had been quite worried about Charlie over the weekend. They had detected an increase in pressure in his head and, along with the results of the ultrasound on Thursday and a reported increase in bradycardia events the criteria for intervention had been met. We countered that, since he had just had surgery this morning, was another surgery on Thursday really a good idea? Further, we discussed that the bradycardias had reduced and then we felt his head again and it was softer. With great relief, it was all agreed that there was no need to have the procedure on Thursday. Instead, we'd wait until Christmas.

Aly the optimist also got the neurosurgeon to admit that it was possible (very unlikely, but possible) that Charlie might start absorbing the fluid without the procedure and that this extra time will give that hope a chance of happening. She then decided to ask her "specific prayers" to pray speficially for that. 

Here's poor wee Charlie after his surgery;