I realised how surreal this journey is after the 1.5 minute conversation I had with Pete in the hospital car park as we coincidentally crossed paths at 4:15 yesterday afternoon. To the best of my knowledge it went something like this:
” Hi, can’t talk now, will call you once I’m in the car as I need to race to get Isabel from After School care before the traffic builds up. But just quickly how are you feeling (we’ve both had a virus this week), will tell you the pain management plan for the weekend, oh and by the way they’ve started him on Methadone this afternoon, talk in a bit”.
It’s amazing what time and sleep does for your mind and body and I am pleased to say that the taste left our mouths from the experience over the past two weekends has almost been washed away.
Last weekend, whilst he was in hospital with increased pain from worsening Pancreatitis it was incredibly frustrating and heartbreaking to watch as the anaesthetic Doctors who cover the weekend shift on behalf of the Pain Team were very reluctant to make the switch from Morphine to Hydra-Morphine despite pleas from both ourselves, the nurses and his weekend Oncology Doctors to do so.
Despite the introduction to Ketamine on Saturday, as the weekend wore on his pain worsened and there simply was not enough done to address his pain levels. As a result of all of this, it wasnt a great start to this week. Poor little Ed was absolutely exhausted and in an enormous pain. By Monday afternoon when I politely asked to see the Head of the Pain Team so that he could see first hand Edward’s pain the switch was made pretty quickly.
I also had a long discussion with the Pain Team on Friday afternoon so that there was a clear plan in place should there be a repeat performance from last weekend which included the ability to call our own Rapid Response should we not be satisfied with the length of time we have to wait to see an anaesthetist or should we not be happy with their decision.
A calm and constructive letter on my behalf, followed by an acknowledgement and planned detail response from both the Governance Unit and the Head of Oncology (also his doctor), more in relation to what had happened the previous weekend, has been somewhat calming and we are able to move forward. I guess the longer you spend in a big system such as this then things are eventually going to happen to frustrate and annoy you as overall I do believe it’s a pretty good system and one that generally works quite well. When liaising with other NPC families in the U.S who are constantly having to fundraise for their child for simple things like medicine and medical equipment I am constantly reminded as to just how lucky we are to be in the Australian medical system despite some if its challenges.
Earlier in the weekend the little guy had a CT Scan under GA to ensure nothing structural had happened to his Pancreas or any further changes to the fatty liver deposits that I have mentioned previously. That all came back clear.
His Pancreas levels have been up and down all week, and accordingly so his pain. Overall his pain is not really well-managed with the neuropathic pain increasing through the week. On Thursday he had some pictures taken for the Annual Report as they profile some of the for fundraising purposes. Despite not being in his best form he put on a brave face and gave it his best shot. It was quite beautiful to watch his face light up every time his beautiful sister Issy was mentioned.
He seemed a little better in the second half of the week and even managed to make a cup of tea on Thursday night for his Gramps.
On Friday morning they have started him on Methadone as neuropathic pain can be a side effect of hydra-morphine to see if that helps. This means that my little junkie is currently on Hydra-Morphine, Ketamine, and Methadone. We are all very keen to get his pain levels sorted as we are scheduled to have 11 more doses of this type of Chemo over the next 6 months. He is meant to be receiving IV Chemo once a week for a month, then oral Chemo for a month then and it goes like that 3 times in total. So far we are 3 weeks behind schedule for the first month as he’s only had 1 dose of the scheduled 4 for this month alone so you can only imagine who long and drawn out this 6 month process could become if it continues in the way it started.
At this stage he is scheduled for his second dose for this month on Monday, it’s all very bittersweet. We hope it goes ahead but we brace ourselves for the potential carnage. Who knows, maybe it won’t come. The good news, is that from the oncology perspective on paper he is good and responding well to the Chemo. We just have to put one foot in front of the other and hope for the best.
He’s had a pretty bright day today with visits from his Nanny Sue and Phyllis whilst Issy and I spent the day at the St Kieran’s family fun day and tonight is my date night at the hospital. This afternoon he’s had increased stomach pain and therefore more pain relief along with a temp. Hoping the dust settles and he a has a restful night sleep.
In other news, here is a pic of the beautiful measured and controlled Issy with her spotty cookies we made for the Fun Fair. I must admit it wasn’t exactly what I wanted to be doing with her 6:45 on a Friday night but she was so very proud of them that she initially refused to try even one last night as she wanted to save them for all for the Cake Stall. She was horrified when I took one but after some coaxing was happy to share with me.
Meanwhile the Tornado continues his work experience program at the hospital rotating from Hospital Porter to Bed Maintenance, specialising in Air Bed controls. No job too big for this small guy!!