Mummy says that out of our entire journey so far, this week has been the hardest. Both her and daddy have been at rock bottom and didn’t really know where to turn or how to make it better. It has been hard.
Since our last blog, Rory became quite poorly. He became very distressed (to the point where mummy and daddy could not cope watching him crawl about the bed in pain any more and asked for him to be sedated) and he began refusing feeds, vomitting and losing weight. He also became dependant on oxygen. Over a period of 11 days he went from bad to worse. It broke mummy and daddy who despite them telling the troops of medical professionals every day, felt that nothing was being done. Easy to assume as a parent when things don’t seem to be moving quick enough and everything is heightened by emotion…..but in this case nothing was actually being done. This became apparent last week when mummy and daddy finally lost their cool and shouted for help. It’s sad but it really was a case of he who shouts loudest gets heard.
Many of the nursing staff read our blog and it must be said the majority are great, the problem was more with consultants failing to follow basic rules of multi-agency working and simply communicating. Only when all teams and the ward manager were together in one room did we all realise that everyone thought someone else was dealing with Rory when in actual fact nobody was. A lead consultant was elected and a plan put together for moving forward. Apologies were exchanged, both on their part for failing us but on mummy and daddy’s part for loosing our cool. It’s sad that it got to that as neither mummy or daddy are of that nature but were so desperate that they felt that they were forced into corner where fight or flight was the only option and flight was never an option. Mummy and daddy would do anything to keep us safe and happy. Anything.
So…..tests were taken and it turned out that Rory was riddled with a variety of infections and viruses. The joys of being in hospital at this time of year with no immune system. Antibiotics were prescribed, continuous tube feeds and oxygen, the pain team prescribed morphine and we set off on our journey back to the good place we had been only a fortnight before.
It must be said that throughout all of this and every day since, daddy has been ‘on it’ with regards to rorys care. He watches everyone and everything like a hawk, truly feels that he is the only expert in Rory (that’s true) and stands his ground with all involved in his care to make sure the decisions and plans made for Rory are the right ones and that no time is wasted in getting him home and well. Mummy (control freak) never thought she would take a back seat but she has and fully trusts daddy to do the best, mummy has burnt out and needed someone to take over while she recharges anyway….that’s why they make a good team.
So what has been happening over the past fortnight….
We both had our first RSV injection to help build our immune system against colds so that we don’t end up with bronch and in hospital.
Mummy made Rory a space cave at the hospital….
Aunty Mandy bought us a neckerchew……(sorry Rory but you can have yours when you are home)
Nannie H has been a rock! She has been on hand night and day (as has Aunty cake maker Mandy, Aunty keep mummy company Chloe, Aunty vicky and uncle Nath (the weekenders) Aunty too nice for her own good nat and grandad and craig too although both are very busy) Nannie bought us some helium balloons when we were 6 month old. Mummy was very impressed with my hand eye coordination….
Mummys friends Emily and claire came with gifts…..
We are growing into big strong boys weighing over a stone each now!
So Daddy worked with the Drs and nurses to make a plan. Hopefully Rory will be allowed home for the afternoon next Monday but mummy has a cold and so if me or Rory catch it….we are in trouble.
A difficult few days ahead with mummy in isolation. 😔😔