Sometimes life is great and sometimes you wonder what's happening. In any situation you get to choose how to react. Choose Joy.
Tuesday, August 9, 2011
How much pain can a patient take if a patient can take pain?
I know it's been a while since I've written. There are many things to write about. The problem is picking one or two things and trying to pull them out of the mass of thoughts going through my head on a daily basis. I don't do well with change and that's all my life consists of these days. Let me see if I can back up my thoughts and try to catch you up.
Aaron's parents came out to visit at the end of last month. They were here for 10 days, and in that 10 days we watched all of the Harry Potter movies and ended it by going to see the final one in the theater. That was fun since it had been a while since I had seen the first ones. Also while they were here Relay For Life happened. It was something we had been preparing for for months. We had an awesome team of friends who helped up have someone on the track for all 24 hours of the event. I, along with four of our friends stayed the full 24 hours. Our team raised just over $1,800 for the American Cancer Society. Aaron was able to be at the event for quite a few hours. He participated in the survivor lap, for those who have beat cancer as well as still have cancer, along with his caregivers, me, his mom and dad and our friend Tim.
Right before Aaron's parents came to visit, his pain started to increase in both his liver and colon. The Dr.s and hospice nurse raised his pain medication by 10mg at each dose (3x a day). Again, just this last weekend, his pain level increased greatly. We called late at night on Thursday and talking to the on call nurse who told up we could increase the dose of his secondary pain med, which we did and it helped somewhat that night. The next day had really no change. We were able to go to the first get together for Aaron's 20 year high school reunion and stay for about an hour before he had to come home. Saturday his pain increased again. Of course being the weekend we got the on call nurse and not his regular nurse who knows him. There was a very frustrating conversation and after 20-30 minutes it was decided he could once again up his pain meds by another 10mg at each dose which brought it to a total of 50mg on Methadone 3x a day as well as using the 50mg of Oxycodone every hour as needed. At 20mg per ml, we successfully used up 60ml bottle in three days. We are currently still at that dose and it seems to keep his pain level at a constant 6 out of 10 on the pain scale, with some increases on and off.
Since the last increase I, as well as Aaron, have noticed a significant change in his vision, stability, thought process, ability to communicate, as well as increased sleeping. I feel like I'm watching him, bit by bit, fade away. Aaron is no longer able to play his XBOX 360, which used to give him a great distraction and way to deal with pain. Not only is he unable to see the screen or read any directions, he falls asleep before he's able to play. He is now dizzy often with any movement and has taken several falls in the last couple weeks. He has started to hallucinate more when he's really sleepy and talks about things that he's dreamed about or seen in a brief moment of closing his eyes. He's still at a point where he knows those things haven't happened, but I know it has to be frustrating. I've seen him struggle and get frustrated that he's unable to draw cards for friends anymore. I have seen this disease take away almost everything that played a part in making Aaron who he is. Most days he sleeps the majority of it.
After a visit with his nurse today, he will be put on a portable pain pump. This will replace his methadone and oxycodone with a constant stream of pain meds as well as give him the option to his a button every 10-15 minutes for an extra push of the medication. The hope is to have it in place and have working for at lease 24 hours before the weekend starts. Hopefully all the paperwork gets processed in time.
I know, logically, that the increase of the pain meds and the effects it's having, means that things are starting to wind down and the end of the road for this journey is coming up. While I am nowhere near ready to loose Aaron, I do look forward to the day that he's no longer in this horrible pain, not only physically, but emotionally.
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"I have seen this disease take away almost everything that played a part in making Aaron who he is."
ReplyDeletethat, says it all. love you both.
I know I say this every time I comment to you or Aaron but it's always true: Thanks for being honest. Thanks for sharing with those who care, exactly where you are on this journey. I'm still praying.
ReplyDeleteAnd -- I like your new background! Fun and so you!