Updates (Dec 4-10)
Sunday (12/4) – We were really hoping to find Ian more comfortable today. It didn’t happen. His pain had only gotten worse. He’d reached his breaking point.
He has been so stoic, despite the pain, still calm, still friendly, still smiling at every doctor and nurse. Today he cried. His pain is unrelenting and he is really feeling the weight of everything. So much has changed. He has cancer, he’s stuck in a body that doesn’t work the way it used to, and now he’s in constant pain.
“I could just scream all the time…”
He transferred to the PICU in the late afternoon. They’re going to start a ketamine drip, and they’ve mentioned several other tactics, including methadone, a lidocaine infusion, lyrica, & elavil, and probably more things I can’t even remember. Oh, yes, and a much higher dose of melatonin at night. 3mg is good for sleeping, but I guess some docs have used much higher doses for pain relief, something like 20mg…
His blood pressure has been rather high, which is not surprising with being in so much pain- that is pretty distressing on a body.
Monday (12/5) - The steady flow of multiple doctors in and out of Ian’s room is pretty impressive.
Tuesday (12/6) – They keep adjusting the meds that he’s on, higher and higher. Each time he gets a new med that is even remotely like a narcotic, they start with a very small dose as everyone wants to be sure that his body can tolerate it. He’s given us some scares with drugs reactions, so slow and steady baby steps it is.
Wednesday (12/7) – More increases in meds, still in pain, much worse when moving or doing anything on his feet, like standing, but Physical Therapy is really important in healing from nerve damage and so the folks with PT and OT keep making him stand, even if it’s brief. He needs to keep moving things and to keep having sensory input going through those nerves. He’s determined to fight through the pain and do what it takes, but boy it sure does take a lot out of him to do it.
Thursday (12/8) -Ian had an LP (Lumbar Puncture/Spinal Tap) for more tests. At the same time, he had an anesthesiologist in to place an epidural. The initial burst of pain medicine brought a bit of relief, as well as some strange numbness, including his face.
When the meds finally got hooked up and flowing in the epidural, it took a while to feel any relief, and it really wasn’t much at first.
They also tried a bag if IVIG tonight, thinking that if Ian has an underlying immune deficiency issue causing some of his problems that maybe this would help…?
Friday (12/9) – By morning Ian was feeling pretty good, he said his pain level was down to a 1 or a 2 (he can rarely narrow it down to just one number, he cracks me up) which was awesome- the only problem is that since they had started two very different treatments yesterday, it was pretty much impossible to tell which one had brought the relief…
He was leaking CSF (from the epidural sight on his back), so they turned it down just a tad to see if the pressure was just a bit too much. Shortly after that, his pain level began increasing again, and over the course of a couple hours returned to right back where it had been, 7, 8, 9… more than uncomfortable… they turned it back up, gave him an extra push of the same med (can’t remember which one that was), and added a second med to the epidural (can’t remember that one right now either…) No more relief, so frustrating.
I felt so bad for him today. He pretty much just wanted to check out and go home in pain, since he isn’t getting relief here, even after an entire week. We convinced him that it wasn’t quite that easy, that he is on A LOT of meds right now, some of which you cannot just turn off without some serious withdrawal issues, and there are some other things going on right now that would just make it way too difficult to be at home right now. Hopefully soon.
Saturday (12/10) -I know there is plenty that I’m forgetting, and that’s what I get for not keeping up daily and writing this after-the-fact…
I want to thank everyone again for your thoughts & prayers!
This very hard, very long journey has NOT been a lonely one. Your thoughtful comments, e-mails, cards, and letters have meant so much! This world, that can seem so big and cold at times, has become so small, cozy, warm, and friendly for us, and we’re so grateful.
Thanking Him, for all of you!
I’ll keep adding to this post throughout the week, check back for the latest update…
Ian’s cancer story and updates
{ 3 comments… read them below or add one }
I’ve followed you on twitter for sometime but I’m rarely on there so I guess I’ve missed Ian’s story. I’m all caught up now from beginning to this most recent update. I wish I could be there to sit for you, cook, clean, ease your burdens…it’s a road no parent wishes to travel. I thank the Lord through every post I read your awareness of His graces…I will lift you up as the Lord brings you to my mind. May the God of peace continue to bring you all hope and joy as you trust in him.
Just wanted to let you know another person is praying for you, Ian and your family. I started following your knitting blog a long time ago, and found this blog through that one. I used to work as an R.N. in pediatric oncology many years ago, so I understand a little (very little) of what you’re going through. I will keep praying!
Thinking of Ian a lot. Hope he(and the docs) are getting the pain under control and pray he is on the last chapter of this book. Time to write a new one!