There is a lot of extra work that goes into caring for a child with a chronic illness, though add post BMT care on top of that and your day gets full rather quickly. It’s been 24 hours since we were discharged and we are already more exhausted than usual.
We love being back together as a family, though being a nurse was not the career path I chose and is something that is taking it’s toll. Even nurses only work 12 hours a day, with extra days off for night shift. Levi’s medication schedule run’s from 6am to midnight, the overnight feeds run from 7pm to 7am and that is assuming that there are no extra surprises thrown in for good measure. In short he is needing something down his NG every 2 hours at a minimum.
Last night, on top of the regular checks a mum does on her sleeping kids throughout the night there were some rather fun discoveries. As Levi is getting 65% of his daily food intake via the NG overnight, it means that he needs a minimum of 2 nappy changes after midnight to ensure that there are no accidents. When I woke to check him at 2:30am it was to a bed full of formula!! Somewhere between midnight and 2:30am Levi’s NG had disconnected from the feeding pump and the formula had been pumping straight into his bed. From the amount of liquid in the bed I can only deduct that it had been disconnected for at least 2 hours!! Poor Levi was soaked from head to toe and was extremely sticky, oh and the formula stinks. So an hour later after a sheet, PJ, nappy change and a quick feed, (Jude not wanting to miss out on the action and needing a night snack), we were all back to sleep.
The next morning we had a trip up to C2 North (the day stay ward) for our ‘quick’ blood test, and surprising to Levi and myself it was extremely quick and we were back to the apartment within the hour. Shocked that we had the rest of the day off together meant that we cold catch up on some sleep as we were all still quiet tired from the nights events.
All the boys were having some quiet time and watching a movie in bed when “crouching tiger, hidden Jude” struck… he decided that Levi’s NG looked way too appealing and yanked it out in his ninja like fashion!! We were able to save it from coming all they way out, though Jude has a really good grip and it took some muscle to get it back. “Quiet time” turned into a distressed Levi extremely wary of his little bother and resulted into another trip to the hospital for re-taping of the NG in place and making sure it was still where it should be, in his stomach and not his lungs.
So a “day off” from the hospital still saw us having 2 trips to the ward, just incase we were missing the fun of C2 North, and Levi regularly telling Jude off for touching his “nose noodle”.