Surgery

The surgery will be Monday, September 24 at 9am.

The preparation time has been emotionally draining for all. Jan is doing a lot better with the new medication, but still there are some side effects that Jan would like to get rid of.

I have learnt that neurology is more art than science, medicine knows still very little of how the brain works or heals and when a medication is prescribed, it is a hit and miss thing because each individual reacts to the chemicals in a different way!

But don't get me wrong, I still respect the efforts of the surgeons and specialists, even though their knowledge is so limited. They are courageous people to do what they do, knowing what they know.

Here is a picture of what they will "fix" in Jan's head, except that instead of the bone flap Jan will get a plate made of polymers:


















Please join us with your prayers in this stressful time. Before, through and after science we trust that the maker of Jan's brain will protect her.

Fede

The Friday before

The countdown has begun!

The time of the operation was moved earlier to 9:00am on Monday, 24-Sept-07. This means we will have to be there at 6:30am. I am feeling tempted to pitch a tent in the park across from the hospital to make sure we are on time.

This week has been particularly hard for Jan as she struggles with the 7th medication she tries for seizure control. The effects are just overwhelming and the difficulty to access the neurologyst on a short notice makes it more difficult. Her right side has been "emptied", as she describes it; there is little or no sensation, the right hand is totally limp most of the time, and there is a generalized feeling of unwellness all over. She says that her head "is out there" and indicates a point in front of her. She tires easily and is emotionally over-reactive. The quality of life is so low that we wonder what is best, to risk a seizure by not taking the medication or give up a normal life and live like a zombie.

I watched this afternoon struggle on the phone with the insurance company. In bits and pieces, she told them her frustration when she received this morning a letter from them rejecting her application for extended health because she had an aneurysm! We realized that now that she is down and needing coverage for medications, the underwriter let her know in no uncertain terms that she would not receive any coverage, which is the same as telling her that she is not welcomed to apply. Business logic? Discriminative action? At the end, it didn't matter. After talking with 8 people, she received the standard "we will call you later". She was loudly discouraged.

I wonder how could I (we) make her stronger so she goes to her operation rested and strong.

We are stressed even though we know it is a routine surgery.

I will print for her any emails you send. Make them short because she can't read more than 40 or 50 words at a time.

FC

Surgery number 4

It has been 19 months and 9 days since Jan was rushed to a hospital with a blood clot in the left side of her brain the size of a golf ball. In the first three days, she had two operations to stop the bleeding and to repair the damage caused by the aneurysm.

Almost four months later she had another operation to get the bone flaps replaced above her left ear, which had been kept out of head and in a freezer, to allow extra room in case of swelling of the brain. The operation was not a complete success, because the bones were already dead after all these weeks in a freezer. Jan came out of this surgery sporting a perfectly round head -only for a few weeks- and with the onset of seizures that still plague her until today.

Her body did not "recognize" this dead bone material and began to dissolve them slowly, leaving her head with a dent on her left temple. The neurosurgeon, in a consultation last November, agreed with Jan's request that the dent had to be fixed, and so the lengthy process to schedule an operation began.

10 months later, the neurosurgeon who fixed the aneurysm and the plastic surgeon who put the dead bone pieces, finally found time to fix this problem. A polymer plate has been "designed" to match the contour of Jan's head. It will be attached to her craneum with titanium screws after the old dead bones are cleaned out. According to both surgeons, this surgery is low risk, because they will not touch the brain again, they will just work over the "dura madre" (the hard membrane that covers the brain), place the plate and then close the skin again. All this will take about 4 hours. Yeah, there is no drive-in for this kind of surgery! Then, Jan will stay 3 or 4 days in the hospital for observation, to make sure everythis is allright.

The surgery is scheduled to take place on Monday, September 24, starting at 12 noon.

Why am I telling you all this? Because we need your prayers. Not to change God's plans, but to strengthen our faith and patience.

If you happen to feel that you want to send some love our way, we will welcome it with open arms.

How can you send love to us? Well, we will leave that to you. However, be assured that we will know and will be glad when we receive God's love through you.

If you want to keep updated, check the blog: http://jangetwell.blogspot.com

If you want to drop a line for Jan, write directly to her at: janitawalton@gmail.com

Thank you for being there for us all this time.

Fede and Jan

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)