- Apr 14, 2019
Well after 4 months in hospital, 2 of which are post-trach, we are now looking into options for moving on. Unfortunately any international travel (eg to return home to the UK) has been paused due to corona. Here in Belgium it’s either a nursing home or returning home. Only the latter is what my PALS wants, though very tricky while we are both abroad without many friends and family. It is even trickier because the system here is not remotely set up to accommodate home care like this. Caregivers need to be found by “the family” (ie me) and then sent to the hospital for training. All of this looks and sounds very difficult. My question here is more about the prospects/prognostic element of a trach. I haven’t had a clear steer from any medical professionals, and much of the guidance presupposes a PALS does not get to this stage; but I just don’t have a sense of the risk element of a trach. Are things likely to be stable (all relative) or are we looking at lots of potential infection, difficulty etc? So far there seems to be Robinul every 4 hours plus aspiration/suction as required, with cough assist a couple of times per day. Together with basic hygiene etc, the other bit is PEG feeding and water. Lots of possible problems, I imagine - or do people with experience of caring for someone with a trach have other suggestions for things to consider? The only muscles that work well for my PALS are the eyes. Recently an ophthalmologist said even the facial muscles around the mouth and cheeks aren’t working normally. My PALS can’t part her own lips or keep her mouth open properly, so I am quite worried about progression to the eyes. Diagnosis January 2019 with very few issues before then; and intubation January 2020, so this has been a terribly rapid descent.