Reconstructing Jan

Hi all,

I know, I know, I didn't keep updating the updates more often. Strangely enough, I feel no remorse. So, here are the latest news:

Jan, Mom and I went to see the plastic surgeon today. He has scheduled Jan's head reconstruction for this coming Monday, Sept. 24, 2007 sometime in the early afternoon.

They got last week the polymer plate that will make Jan's head round again. Jan will be doing some pre-op tests to make sure everything is on order.

The operation is expected to last about 4 hours. the first part will be done by the same surgeon that clipped Jan's aneurysm, the second part will be done by the plastic surgeon.

After the operation she will go to the neurological ICU for the following 24 hours. Is she is doing well and there are no complications, she could be home in 3 to 4 days.

They showed us a picture (CTscan) of Jan's craneum and how it will look like after the operation. I must say it looked beautiful! So Jan is willing to go for a few weeks with a half- shaven head

This operation will cut only the skin and clean what's left of the flap bones. It will not cut the membrane covering the brain (dura madre), so the brain will be untouched. They hope not to bruise the brain.

Jan had a big sight of relief. This should be the last operation related to the aneurysm. I saw her very happy now that she will be growing her hair long again. She told me that she had not cut her hair short in all her life!. As you can see, her vanity is intact, perfectly undisturbed by the aneurysm. :)

Here is what you can do (if you are going to do anything):

1. Pray that the surgery may be successful in all ways, this will ensure that she will not have to go back in the future for more surgeries in her head.

2. Pray for the family, as this is an added stress in an already stressful time for several how are experiencing medical difficulties.

3. Check the blog for updates (I will try to post daily progress notes)

4. If you decide to visit Jan at the hospital, remember:

• that she loves your company, but she needs quiet and rest.
• that she needs you to bring positive energy to her, if you are not in a positive frame of mind, please don't come as this will only drain her energy.
• keep your visit short.
• she needs your touch, but do it ever so gently, as the medications have made her over-sensitive to touch. Remember that her right side is over-sensitive.
• When visiting and talking to her come to her left side as her vision on the right is limited.
• She loves your greeting cards better than stuffed animals or toiletries. You don't need to buy expensive cards, be creative and make your own! She loves original art, particularly if it comes from you.
• Bring a recent picture of you for her collage and write your name on it so she can practice repeating your name.

I found this very useful list in a wonderful book written by an MD who is an aneurysm survivor. It should give you a good perspective of what patients need. Of course, this surgery is not as instrusive as the one when they clipped Jan's aneurysm, and jan has already "graduated" deom many of these stages, but the list is still useful to make your interactions with Jan more satisfying for you and her.

40 Things I need the most

1. I am not stupid, I am wounded, Please respect me
2. Come close, speak slowly, and enunciate clearly.
3. Repeat yourself -assume I know nothing and start from the beginning over and over.
4. Be as patient with me the 20th time you teach me something, as you were the first.
5. Approach me with an open heart and slow your energy down. Take your time.
6. Be aware of what your body language and facial expressions are communicating to me.
7. Make eye contact with me. I am here –come find me, encourage me.
8. Please don’t raise your voice –I am not deaf. I’m wounded.
9. Touch me appropriately and connect with me.
10. Honor the healing power of sleep.
11. Protect my energy. No talk radio, TV or nervous visitors. Keep visitations brief (five minutes)
12. Stimulate my brain when I have the energy to learn something new, but know that a small amount will wear me out quickly.
13. Use age appropriate educational toys and books to teach me.
14. Introduce me to the world kinesthetically. Let me feel everything.
15. Teach me with monkey-see, monkey-do behavior.
16. Trust that I am trying –just not with your skill level or on your schedule.
17. Ask me multiple-choice questions. Avoid Yes/No questions.
18. Ask me questions with specific answers. Allow me time to hunt for an answer.
19. Do not assess my cognitive ability by how fast I can think.
20. Handle me gently, as you would a newborn.
21. Speak to me directly, not about me to others.
22. Cheer me on. Expect me to recover completely, even if it takes twenty years!
23. Trust that my brain can always continue to learn.
24. Break all actions down into smaller steps of action.
25. Look for what obstacles prevent me from succeeding on a task.
26. Clarify for me what the next level or step is so I know what I am working toward.
27. Remember that I have to be proficient at one level of function before I can move onto the next level.
28. Celebrate all of my little successes. They inspire me.
29. Please don’t finish my sentences for me or fill in words I can’t find. I need to work my brain.
30. If I can’t find an old file, make it a point to create a new one.
31. I may want you to think I understand more than I really do.
32. Focus on what I can do rather than bemoan what I cannot do.
33. Introduce me to my old life. Don’t assume that because I cannot play like I used to play that I won’t continue to enjoy music or an instrument, etc.
34. Remember that in the absence of some functions, I have gained other abilities.
35. Keep me familiar with my family, friends, and loving support. Build a collage wall of cards and photos that I can see. Label them so I can review them.
36. Call in the troops! Create a healing team for me. Send word out to everyone so the can send me love. Keep them abreast of my condition and ask them to do specific things to support me –like visualize me being able to swallow with ease or rocking my body up into a sitting position.
37. Love me for who I am today. Don’t hold me to being the person I was before. I have a different brain now.
38. Be protective of me but do not stand in the way of my progress.
39. Show me old video footage of me doing things to remind me about how I spoke, walked, and gestured.Remember that my medications probably make me feel tired, as well as mask my ablity to know what it feels like to be me.

(from Jill Taylor, My Stroke of Insight, 2006)