Today has been a bit of a frustrating day. It started with me complaining to the manager of our doctors surgery for their continued incompetence with dealing with the boy’s prescriptions. If it wasn’t for the adjacent chemist who have simply been amazing we’d have found ourselves in trouble a number of times.
Because of the strict use-by dates on his medicines we can’t order them too early or we will end up wasting a lot of the medicine to then go on the new bottle. But I always give us and the surgery plenty of time to process the request. But more often than not they make a mistake. They either lose the prescription request (“sorry it’s been left in the drawer” or “sorry it had fallen through the tray and we hadn’t noticed” or just “we don’t know what’s happened to it”), or they change what I’ve requested and put through a request for a medicine that Sam no longer has – thankfully the chemist queried it as he hadn’t had the medicine in quite a while. A number of times we’ve been told that the form was in the pile about to be taken over to the chemist but then I speak to them next day and it hasn’t even been signed off by the doctor! Aaaarrghh!
Anyway, I called the manager, found myself angry one minute then quite emotional, particularly as I said that these weren’t just vitamins, these medicines stop him having a seizure that could kill him.
Then I had a really annoying appointment at the hospital. It wasn’t to do with Sam’s head or seizures in fact it was to do with the other end. When he had his gastrostomy operation they dropped one of his testes but decided not to do the other. They are now talking about doing the other one. I’m not keen. He wees just fine and I really aren’t keen on him having an operation at the moment (especially as we’ve just got over a series of bugs) and will it really make a difference?
The surgeon we met today hadn’t met us before. Had probably only seen Sam’s notes briefly before our appointment. He didn’t understand Sam’s condition. I had to explain. I had to explain Sam’s life expectancy and whether he is expected to reach his teenage years. Bearing in mind 50% of children with Sam’s condition don’t reach one year old, the answer is unlikely. I had to go over this stuff with him more than once. I asked him to go back and discuss this with Samuel’s Neurologist and then come back to me as they are the medical experts. This chaps colleague (who did the previous surgery on Samuel but had been called away today) actually shares an office with Samuel’s Neurologist so the phrase ‘get a room and discuss’ seems a bit daft. Anyway, I was pretty hacked off.
(By the way the surgeon told me right at the end of the appointment that there is a slight risk that if the other testical isn’t dropped into place then it could become cancerous. I’ll just add that to the list of stuff to worry about then.)
But then afterwards I had a coffee with my friend T or Auntie T as I should call her as she is Sam’s other Godmother. On days like these you need a friend like her. I’ve been banging on recently about needing people in ‘our world’ to talk to but I already have a great friend in T. Yes her son J is fine, developing so quickly he’s going to be running about before long and I may be the only person she knows with a disabled/special needs child, but you know, I think she gets it. When we had Sam’s diagnosis and prognosis I rang her to tell her. We both cried on the phone. She demanded that she had to come over and see us and have a cuddle with Sam. She’s always been there and I don’t think I’ve ever really appreciated that. Although she has her little man now and he is quite a handful, it is so obvious how much she loves Sam and relishes being his Godmother.
So although I’ve felt really quite pissed off today I have learned something. Sometimes what you are looking for can be just under your nose. Auntie C and Auntie T, friends for life. x