There's an irony when someone who hasn't updated their blog for a while starts with a moan about communication. Unfortunately for us tho, that seems to be the constant topic for conversation in this bloody place. It has been pretty crap from the complex care team and nurses right from the first days on the ward. It got even worse when our eventual home care team, orchard care, started coming up to the hospital to complete their training with jovie. Then since the bristol weekend, things have gone from bad to even bloody worse.
Having been told we could take jovie anywhere as we are fully trained, we headed down to grandads for a visit, while there our training was put to the test with our first home emergency, which as horrible and frightening as it was, was dealt with exactly as we had been shown. We eventually get back to brum to be told that Jovies doctors weren't told about our trip and its caused them a mountain of paper work (tough shit). Turns out us telling the morning nurse, who didn't pass it on, the afternoon nurse, who didn't pass it on and then the night nurse, who also didn't pass it on, wasn't quite enough. The exact same chain of incompetence happened just yesterday when having left specific instructions for Jovies Physio to be done (should be every morning) we arrive in the late afternoon to be told they've left it for us, as no message was passed.
The fact the nonsense in bristol was made all the worse by the fact we were given the wrong equipment (a tube for her oxygen which didn't fit her oxygen) just further compounds are annoyance with this place.
Alas tho, we are stuck here, at least for now. The house is still at least 6 weeks away from being ready. So that's at least 6 weeks of not being told if jovie needs her feeding tube inserted into her t
stomach, something she's supposedly been on the waiting list for for months now. 6 weeks of people asking us about meetings we haven't even been told about and having to explain the same thing over and over and over again.
We took jovie back to the accom. today as we often do on weekends, and watched groundhog day with her. Sometimes it feels like we are living it.
On the far less negative front, jovie is doing well with her sitting up, holding her head up, holding and bringing things up to her face. She is also now enjoying time on her belly and spends more time laughing than one of the jokers laughing gas victims! Her most recent weight came in at a whopping 13lbs 7oz, while her baby hair has almost all fallen out.
Thankfully the emergency in bristol has been the only incident we've had to deal with on our little trips away from the hospital. Five months we've been on this road now. Tired, worn out and massively fed up, but couldn't be prouder or more excited about getting our family home, at last.
