I remind myself of this many, many times as our day went as follows:
- Oscar gets woken unnecessarily at 6am to have his lines changed despite the fact that they had kept him up til 11pm changing his lines just the night before. On this same night we had been abruptly removed from our room of the previous 7 nights because Oscar was deemed well enough to be in a share room in another ward. I tell myself again and again. Surrender.
- Oscar spent the morning screaming over and over from 6am "bottle" "food" "drink" as he was fasting in preparation for a lumber puncture. I responded to his desperate screams with highly ineffective distraction techniques and strategies. Surrender.
- 10am and blood results show neutrophils not high enough for procedure to go ahead so I ask if I can start feeding him. They say yes. Oscar cheers and gets super excited. 10 minutes later, as Oscar is just about to start his first mouthful of yoghurt the nurse returns to tell us there is a change of plans and "the team" (meaning a bunch of invisible Dr's we haven't seen all week) wish to go ahead despite the low neutrophils. I'm not sure what this means and want someone to explain.
- 11am Dr comes to explain its ok to go ahead as his neutrophils are on their way up and all other bloods good.
- 11.15am a miracle occurs and the porter arrives to take us to surgery. We will also be having a 1 hour drip of chemo followed by 6 hour drip of fluid and they are supposed to start that before surgery (preferably as close to 6am as possible) but they forgot to order the chemo. Surrender.
- Off to surgery and focus on the miracle of this early timing. Get to waiting room and the anesthetist wants to know why I don't have an accredited chemo nurse with me. No idea? Nurse who is with me runs away in direction of our ward. The Dr has a very long list of procedures to get through and can't wait any longer. We get wheeled into surgery and Dr finds out we don't have an accredited chemo nurse or an A1 (an essential piece of paper that tells Dr which chemo is going where and when). The Dr can't go ahead as is injecting said chemo into Oscar's spine during lumber puncture. Dr rings many different departments to chase A1 and nurse. Dr hangs up phone and says to me, " what is wrong with this place that I am chasing these things in the surgery room. I'm a Dr". I reply, "No idea but if you figure it out could you complain to the appropriate people" She replies, "I'd have to find them first". I smile. Surrender.
- Meanwhile Oscar is freaking out. He knows the procedure. He has had more than a total of 16 surgeries in the last 8 months and he knows what happens and in what order and he is usually calm and happy but he knows there is something out of order and he doesn't appreciate it. He lets us all know. This is disappointing for me because if he goes down distressed, he wakes distressed. If he goes down calm, he wakes calm. We both prefer calm.
- Eventually the Dr goes ahead without said A1 or accredited nurse but borrows someone from the next door theatre. I hold him as they give him the anesthetic, give him a kiss and say, "See you soon".
- I am starving so I go to the cafe to get a meal. On my way there I pass a frazzled nurse who is running with Oscar's A1 in hand. I direct her to surgery room 7 and smile some more.
- I always fast with Oscar because I can't possibly eat in front of him. All the mums do. I order my meal dizzy with hunger and anticipation. Wait. Wait some more. They realise they gave my order to someone else and are redoing it. My buzzer goes off and I have to be in recovery as Oscar is back. I leave, still hungry and rush off to Oscar. I find him distressed and still half out of it, a dead weight to hold and no muscle control of his neck but wants to be in my arms and screaming and rolling around like a jellyfish. I surrender.
- We go back to the ward and the nurse is on lunch and I just want the drip to go up so we can get out of here at a decent hour. That doesn't happen. We leave at 7.40pm. Surrender.
- Before this delayed departure a nurse visits to say she has been looking for Oscar's A1 for hours and couldn't arrange a nurse for Oscar's home care in the coming weeks until she found it. I tell her, "Last I saw it was in a nurses hands being run to surgery room 7" She hurries off muttering to herself. I laugh out loud.
The highlight of our day is a visit from Dad and Debbie, who get me fed, spoil Oscar and cheer him up so much he hasn't stopped talking about it.
The other highlight is getting home.
A special thanks to Dad, Debbie, Mum and Robyn for all visiting during our stay. Oscar talks non-stop about your visits when we are in there and it really lights up his day. Thanks to Mum also for keeping Auden smiling. Also, thanks to Lisa for visiting me at home and Matilda for your play date with Auden, who keeps asking when he can see you again. Finally, thanks to all of you for any help you have provided in any form - meals, kind thoughts, encouraging chats, texts etc. It keeps us going and we are lucky to have you.
Two more weeks to go of this intensive treatment!!!! More about that later. Got to run...