There are four steps to complete before someone can be approved for the surgery.
1.) referral from my neurologist -Check
2.) evaluation by my rehabilatation physician -Check
3.) assessment and final approval by the pump clinic -Check
4.) test dose of intrathecal Baclofen -March 16th
So what does a test dose of intrathecal Baclofen entail? Here are the nuts and bolts of the procedure:
Beginning at noon on Monday 3/15, I have to quit my oral dosing cold turkey. This part I am NOT looking forward to. Currently, I take my doses 5 hours apart during the day and by the fourth hour I'm wishing it was time for my next dose.
I check into Good Sam on Tuesday morning and am admitted straight to PACU. A pre-dose assessment by PT is done for a baseline of the severity of my spasticity. Then I am prepped in the OR for a lumbar puncture (spinal tap) which is when the Baclofen is injected into the intrathecal space of my spinal cord.
Funny story about my last LP 6 years ago...after 20 excrutiatingly painful minutes of repeated attempts to access my cerebral spinal fluid, the physician finally got the needle in place and the specimen was taken. When she was finished, she explained that the reason she had such a hard time was that given my petite frame, she didn't want to go too far and nick my spinal cord. I thanked her for her precaution and quipped "I guess that means I don't need to grow a back-bone"! Being of middle Eastern descent, she gave me a blank look. After explaining the expression, she chuckled.
Back to the test dose...I am then moved to a patient room where the same Physical Therapist will repeat her assessment hourly. This is to determine when the medication peaks and how long it takes to clear my system. The pump clinic RN and rehab physician will also be assessing me thoughout the day. I am expecting to be able to leave the hospital around 3 or 4 in the afternoon.
If I respond well to the test dose, I will be scheduled for surgery of the pump implantation at Tacoma General Hospital (where I work). I do not know how long to expect. So this is it! Please pray the test dose goes well!
You are definitely in my thoughts and prayers! Please call me if you need anything on Tuesday. I'm not sure what your hour to hour will look like, but you sure can call me for anything.
ReplyDeleteGood Luck Jocelyn. We use baclen pumps at MB for lots of different reasons and I have seen them work well. Thanks for sharing your story.
ReplyDeleteKristi N
Jocelyn,
ReplyDeleteI am so thankful that you've started this blog! I did not have a grasp of what you've been going through in any way & my eyes have been opened in a major way reading your story. Miss Kate has such a strong and brave momma!! You take on the world with grace and poise along with that good old go-get-em gusto! I will be praying for you in a major way and will also be calling you during our next available naptime to catch up a bit. I can only imagine how much courage it's taken to share your personal journey, but in doing so your support crew just grew by leaps and bounds!! Love you, feel a great big hug!!
Christy
You will be in my thoughts tomorrow. I hope all goes really well for you and that this will help you find some relief. I hope you know you are being truly missed at work. Thank you for sharing this with us. Again, you'll be in my thoughts and I'm sending virtual hugs.
ReplyDeletei had no idea Jocelyn. u r going through so much! u r amazing!! if you ever ever need anything please please let me know ANYTIME. U r in my thoughts!!! Love always Dani Newson
ReplyDeleteJocelyn,
ReplyDeleteThank you for your blog posts and allowing me a glimpse into the trials that you are facing. You are such an example of faithfulness and I want you to know that you will be in my prayers for healing, strength and comfort. Let me know if you need anything else. I also wanted to let you know that I just got your note that you posted on my blog and will try and contact you to help you with putting music on your site if you haven't figured it out already. Hopefully I can remember how I did it :)
"The Lord God is my strength, and He has made my feet like hinds' feet, and makes me walk on my high places." Habakkuk 3:19
I'm getting here late, but I hope everything went well!
ReplyDeleteJocelyn,
ReplyDeleteThank you for sharing this with everyone. You are such an example of faithfulness and perseverance. Sorry I didn't get help you with getting the music on your site but looks like you found a way. I hardly every check the comment section on the blog so I didn't get your comment until recently. I want you to know that you will be in my prayers. We will be praying for healing, comfort and strength for you and your family. Let me know if you guys need anything, even a meal if you need a night off. Take care Jocelyn, God is in control.
"Yet I will exult in the Lord, I will rejoice in the God of my salvation. The Lord God is my strength, and He as made my feet like hinds' feet, and makes me walk on my high places." Habakkuk 3:18-19