Given that visiting is difficult I thought I'd share with you some of what Oscar's days are like so you can still feel connected to him during his hospital stay.
On average Pete and I give Oscar between 15-20 syringes of medicine every day. Oscar hates this but is very good compared to a lot of the little kids in this situation. The Dr's say this can be one of the biggest hurdles for families - getting the medication in. So we are very grateful Oscar is so tolerant of us pestering him with them so constantly.
The main medication is a steroid that has a number of side effects. He takes it three times a day. It is the cause of his high blood pressure. It also causes him to be starving hungry every minute of the day and night and gives him terrible mood swings. The nurses affectionately call this "roid rage". He gets very agitated and cranky at times and there is nothing you can do about it. He throws himself around and hits out at everyone around him. Then, just as quickly as the rage hit him he is suddenly overcome with the smiles and loves everyone, then in another flash he will flop down on the bed and start snoring. This is bizarre and disconcerting but we are trying to have fun with it where we can.
On top of the steroid, blood pressure medication, medication to stop him getting a stomache ulcer from the steroid, medication to help him with constipation (side effect of chemo), medication to prevent infection and a few other medications - we also have to wash his mouth with a mouth wash four times a day (this is to try to prevent mouth ulcers from the chemo but is no guarantee that he won't get them) and some nilstat also 4 times a day to prevent yeast infection from all the antibiotics he's having.
Then there are the procedures. There are regular bone marrow biopsy's in these early stages - that requires an anisthetic and needle taking out some of his marrow to test for blast cells. And then all the regular daily observations of his status.
These include blood pressure checks, temperature checks and monitoring of how much he is eating etc. About every two hours he has his blood pressure checked. He hates this and the only way we can get a good reading is to give him a bottle while the nurse does it. This means he is having two hourly bottles as well as all the food! This goes through the night as well. Then there are the Dr's who do regular checks to listen to his chest and generally check him out. Plus there are mummy and daddy giving him drugs on a much too regular basis. All this means that his room is like Pitt St and he is being touched constantly.
When the nurse is finished now he says at the top of his voice, "All done." "Bye" and waves. In other words, bugger off and leave me alone!! The nurses think this is adorable. Yesterday he had a particularly full on day (a needle and an operation thrown in on top of all the usual things we do to him). When the nurse came in with the needle he sat up in bed and said "All done." "Bye" and waved at her even before she got through the door. It was very funny.
His words are coming very fast. He has always been a good talker for his age but the circumstances are giving him a desire to learn even faster. He's not silly and if he can find a way to tell those nurses to go away he will. He has a special relationship with one of the nurses, who is like an angel walking around in a human body. He even blows her kisses and will let her do just about anything. Her name is Kate and we are very grateful to her for giving him some moments of joy along the way.
Aside from that, when he is not hooked up to an IV stand we take him for walks in his pram around the hospital. He hates being in his room and pretty much wants to go for walks constantly. I think we know every inch of the hospital, like its tatooed on our souls.
I have some photo's to put up but Auden has just woken and I have to run. More soon.