It's really frustrating having a conversation with someone when you're both not on the same page. I got the phone call today regarding fasting information for Victor's CT scan and bronchoscopy, scheduled for this Friday. The nurse who called me said that we would have to stop all solid foods at 2am, and he would have to have his last breastfeed before 5.30am in time for the procedure, since it will be done under general anesthetic.
Now, that's pretty simple information. I don't have a problem with any of that at all. But last time Victor had this done, we ran into a problem regarding enzymes.
Basically, Victor needs enzymes any time he eats anything. The enzymes look like tiny little round grains, and we mix the correct dosage into a bit of apple purée for him. The apple purée is needed firstly so he can swallow the enzymes without choking on them, and secondly the apple provides a protective acidic barrier around them so they don't start activating in the mouth or anything like that, and begin their work in the small intestine, where we need them.
Last time Victor had a CT and bronchoscopy, I didn't even think about it until it was too late: I gave him the enzymes with apple purée before feeding him. When we got to the hospital, no one seemed to know if that was ok or not. Some nurses said yes, some said no; the anesthetist said it was fine so everything went ahead.
This time I wanted to remove any doubt and asked the nurse calling me today. She had no idea, and said it was up to the anesthetist whether that tiny bit of apple purée was going to be a problem or not and she didn't know who was going to be on that day. She suggested that I either not give the enzymes (bad idea) or mix them with milk.
"Can you do that?" I wondered to her. Mixing enzymes with milk? I would guess that milk was alkaline rather than acidic?
"Yes, that will wash them down," she said. "Maybe he will choke a bit but he's on solids, isn't he? He should be fine with taking things from a spoon."
It was at this point that I realised I was talking to someone with no real working knowledge of the treatment of cystic fibrosis and who had probably never seen a bottle of pancreatic enzymes before.
So as soon as I got off the phone with her, I called one of the CF nurses at PMH. She was surprised by the question because apparently no one has ever asked that before! She admitted she didn't know the answer but would try to find out. Until then, she advised to mix the enzymes with milk: it's certainly not ideal and he probably wouldn't get much benefit from it, but it would be better than nothing. She said they would have to work with the radiology department and devise a plan for administration of enzymes while fasting because this was a bit confusing. She did say that taking the purée shouldn't be a problem though, because the tiny amount of apple would definitely be absorbed before undergoing anesthesia, but some anesthetists can be a bit pedantic apparently.
Quite a while later I wondered if mixing the enzymes in apple juice could work? I don't think I would be able to bring myself to feed him without enzymes at all because I am so used to it. Sometimes I give Felix something to eat and suddenly have a mini heart attack because 'I've forgotten his enzymes!' Of course, Felix doesn't have enzymes! On a tired day I am at risk of going around giving enzymes to everybody, it's become so routine.
And speaking of being tired, Victor has been sleeping especially badly lately. I finally got a good look in his mouth and there it was, four little sharp points of a molar sticking through his gum! No wonder he's been so miserable lately. It even looked sore. I could feel a tiny sharp speck on the opposite gum so looks like another one isn't too far off. I can't wait for this teething business to be over!