Those
of you that know me will know that generally speaking Im a fairly laid
back guy. Usually it takes a lot for me to really take exception with
something, and id like to think that most of the time i give people the
benefit of the doubt.
Id also like to think that this has been the case throughout Jovies life.
While she was in hospital I think it was pretty reasonable and
understanding of myself and Lorna NOT to kick up a fuss when she was fed
out of date milk. Or make a complaint after Jovie was given a seizure
by drugs she was continually given for a condition she didn't even have
(and had next to no symptoms of). We were even understanding and
forgiving when our concerns were ignored about her initial trachey which
then turned out to be the wrong size, nearly killing her in the
process.
However, yesterday took the piss one step too far.
Readers of this blog may recall previous references to the often non
existent communication at BCH, which in the past has led to regular, if
insignificant annoyance. The example of the bag of someone else's toys
forever finding its way back into Jovies room, despite numerous pleas
for it to be removed being a prime example. More recently the no-showing
of carers at night being another.
Yesterday was all set to be the next big step in Jovies development.
Two days in hospital planned over a month ago, to among other things,
increase her time off the vent and to change the size of her tube. It
turned out to be the biggest example of unorganized incompetence i have
ever had the misfortune of witnessing in my life.
With the plan to test Jovie off her vent all day we arrived at 9am as
requested to be met with surprise on a ward we'd never been on before,
and were frankly bemused to be on. After first telling us we were indeed
on the wrong ward then to be told in fact we were on the right one, we
were informed there were no beds ready yet and we'd have to wait. Fair
enough. (At this early stage there is no sign of any of Jovies doctors
or staff we were familiar with.)
Hours later and with concern building about a) Jovie being left on
dry circuit/off vent (which should only currently be for 6 hours) and b)
with when the time of vent test would begin, we are told a bed would be
ready soon and told to grab some lunch and come back. Fair enough again
i suppose (still not even a sighting of Jovies docs - who, so we were
told would all been in to see her).
By 2pm Jovie had been off her wet circuit for 6 hours and still we
had no room and no clear indication of what was going on. Two hours
later and after more questions from us we are told a room is ready and
docs are on their way to see us. By 430 we are first discussing going home, with Jovie now pushing 3hrs off her wet circuit than we'd
normally allow (or that this hospital had instructed).
Finally at nearly 5pm we get a room. So the day is wasted and Jovies
docs are still nowhere to be seen but at least we have her in a room and
can sort her stuff for the following day. At this point the true
disorganisation of our visit is revealed.
Turns out they don't have a wet circuit on the ward (raising the
question again as to why we are bloody on it) and then they announce
there is nobody on staff to watch Jovie. The nurse in charge is even
surprised when we explain she requires constant supervision, as if her
entire condition is a mystery to them. Unbelievable.
To truly appreciate the severity of the final straw, its worth
remembering that when Jovie first had her trachey it was a 4.0 size. We
were assured numerous times it was working and a perfect fit, yet it
seemed wrong to us and Jovie wasn't herself. It turned out it was not
only not ventilating properly but actually choking her, to the point it
very nearly killed her and only the presence of an amazing doctor on
intensive care saved her life. Jovies current tube is a 4.5. So
naturally we were very concerned about the prospect of going down a
size, but knowing we need to in order to hear her speak we agreed to it
under the proviso that it was done safely and with precautions to ensure
everything went smoothly. (To the extreme we called a few weeks before
to reiterate this and to check they had the right tubes, which they
didn't!!)
So when it was suggested a doctor was going to drop in at 6pm in the
evening, onto a ward with no one-to-one care, none of Jovies equipment
and no sign of anyone familiar with Jovies condition and history to
change her tube, to say enough was enough is a massive
understatement.
At this point, we packed up and left. It was bad enough, but
acceptable in a busy hospital, that we didn't get a bed for so long. But
to not even have a clear msg from Jovies doctors (who we were initially
told would be there, and who through the day we were told were then
weren't even in the hospital), and to be on a ward without the adequate
equipment or staff to look after Jovie was just utterly ridiculous.
After sleeping on it and writing out in detail what happened, we
don't just feel annoyed about the whole fuck up, but worried too. We
have to rely on BCH in emergencies. We need these developments to help
move Jovies progression on. This raises way more questions than i care
to face right now to be honest. A seriously low point in this whole
experience for all of us.
