OK enough slacking

I usually do my updates for Jamey on Mondays with Meandering Monday’s. But as I said yesterday, I’m thinking of stopping participating in the linkup. I absolutely adore the name, and the people there are really nice. But they’re crafters and recipe makers. People with talent. And well, I’m me. So until I figure out where I am going with this, I’ll do what I do best: Talk way to much, be incredibly random, and ramble on. 

Tuesday the 17th, Jamey had two appointments in at Children’s. One with his psychiatrist, and one with his new pain management doctor. The new doctor really isn’t brand new, she’s actually been running the clinic for a while now, but I was avoiding making appointment with her  because of her views on Ketamine. Ketamine is a choice of pain medication for those with CRPS (Complex Regional Pain Syndrome) and it is rather controversial. First off, it’s an animal tranquilizer, and second off, it is abused as a club drug on the streets. But it does hit the nerve receptors that are going crazy with CRPS and it does help. Right now, it is Jamey’s “break through” medication. Until a year ago, it was his main medication. 

CRPS is difficult because there is no real standard procedure of care. It is a rarer pain condition, and Jamey’s is a bit more rare since it is an internal onset. It started after his gall bladder surgery. 20% of gallbladder surgeries do cause some lasting pain, I don’t think there is even a statistic on how many of those develop CRPS. That’s my boy! I’ve always said he was one of a kind 🙂 There are no drugs currently that are just for CRPS, so most of everything done is experimental. Nerve Blocks, Spinal Cord Simulators, Psych meds, Narcotics, Siezure medications, and a variety of others are used. Oxygen chambers have shown promise. Right now there is a medication that is on fast track with the FDA called neridronic acid that has shown a lot of promise in Italian studies. 

Because of the complexity of Jamey’s issues, no doctor in their right mind is going to put him into a clinical trail. And we prefer our doctors to be sane, at least a little bit. I have been watching the studies and it does sound promising, but there is no MD behind my name, and theres the sanity part there too. So, I wrote down the name and took it to both his psychiatrist and pain management and asked them to research it. I left them know that we are interested, but we have no idea about the risks to his liver or how it could interfere with his other medications. These two doctors are his major perscribers, they both have full access to all of his medical records and the education to know exactly what to look for. I will also bring it up to his hepatologist in March. I knew Dr Dave would be happy to research and that he wouldn’t think I was being pushy. Dr Garcia was a very pleasant surprise. 

Jamey’s memory issues very well could be a result of the extended use of Ketamine. We are currently slowly weaning him down and she wants to add a drug that is usually for alzheimer’s disease. It hits the same pain receptors without the memory issues. But Ketamine has some nasty side effects if stopped too soon and Jamey already has one case of medication induced violent blackouts in his charts. So we are going down .01 mg at a time and he will have to be seen every two weeks during the process. I like that. Plus I like knowing that I can call in anytime and they listen. The last time he was taken off of it, he was hospitalized for a week. This is supposed to be a much gentler approach. Unfortunately, he’s also in a pain flair. Stress, weather, and viruses like the flu can cause even “normal” chronic pain to increase. In CRPS, theres additional issues. Even too much noise can cause pain, a small change in room temperature, a breeze or even clothing on the area. Jamey hasn’t been able to wear jeans in years. It took forever for even me to understand that a sudden loud noise, like a slamming door or a dropped glass could actually hurt his side. It makes no sense, right? But it is his reality. 

With Healthcare being such a huge issue in American Politics today, I have been heavily debating it on FaceBook and contacting our representatives in the senate and congress. And now one of our senators decides to compare those with pre existing conditions to burnt out houses, but that is a vent for another day, Mr Toomey… 

Jamey describes his increased CRPS pain as a red hot sword stabbing him repeatedly in the side while someone is digging around in his intestines. i put that a little more mildly than how it was told to me. Jamey is pretty graphic. And that is WITH medication. Without his medication, well, imagine being awake while doctors preformed a surgery on your abdomen. A never ending surgery with multiple hands pulling and twisting your internal organs. That would be more merciful than allowing him to go even one day without his medications. 

This Tuesday, the 24th, was both of the boys appointments. Ed complained on the way down about car sickness, which was a bit unusual, but he generally sleeps once he gets in the car. And he complained a little on the way back home. We had left before dinner, and I knew Ed had only had pop corn before, so when he said he was just going to bed, I made him eat at least a bowl of cereal. Then he started complaining about the pain. I had just told Jim that we were going to have to keep an eye on things when I noticed that Ed was wincing when he sat down, so we headed back down to the emergency department. Thankfully it ended up being that he was a little constipated from his medications. We have him back on track right now and a plan in place to keep him that way. And I didn’t make one “full of poop” joke until Wednesday night! (Edward is so unappreciative of those.) 

I’m not sure what happened, but Wednesday was a really bad day for Dad. All week was escalating, but Wednesday was definitely the worst. Nothing I did was right, he asked questions, no one can ever answer, every tiny little detail set him off. I got yelled at for my sisters. Wednesday, the janitor at Walmart heard about how no one ever calls and I’m on FaceBook all day. Jamey’s in his room all day, Ed’s nose is always in his phone and so is Jim’s. Thursday was much much better. He even had a sense of humor. The weather was changing and we were trying to figure out if it was raining or sleeting, I told him to stay on the porch “Because if you fall, you break a hip, if I fall, I get a vacation.” Yeah, eventually, my mouth will get me in trouble. The filter between mouth and brain is gone. We’ll see what today brings. 

From the looks of things, Ed will be able to go sled riding after school. 

How’s things in your neck oof the woods? 

4 thoughts on “OK enough slacking

  1. Being new to your story, and Jamey’s, I can’t imagine being young and living in that much pain every day. I am grateful that you have good doctors that listen to you and work with you instead of against you! I am glad you had a good Thursday with your Dad too, that helped make up for a miserable Wednesday. Praying for all of you and that things with your Dad improve as time goes on. Be sure to do one thing that makes you happy each day, it’s essential… like vitamins for the soul! XOXO

    1. That wasn’t always the case. It’s took me almost 3 years to put together a team that would both work together with me and with each other. There’s still a little bit where we have to go back and forth, especially with Dr Garcia being new to the pain clinic and Dr Behari (his hepatologist) being at a different hospital (UPMC Children’s for Pain. UPMC Presby for just about everything else) But they will work together which for a patient who is as complex as Jamey, it is imperative.

  2. I am so glad that Jamey has you in his corner …. you are a fighter, and you are a wonderful advocate for him and those with CRPS! Keep fighting the worthy fight.

    1. Thank you Anne. I honestly don’t know where I would be without my friends like you though. On the days where I feel like theres no way I can go on, I know I have you and so many others behind me. Thank you for that.

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