Linda Report, Apr.2, 2011
Thank you to all those who have expressed their encouragement, visited Linda and sent positive thoughts and prayers these last few weeks. As you may have seen from a quick-report I did on Mar. 4, Linda and I took a trip to the Ottawa General hospital on Mar. 1 in order to have her ventricular shunt tested with radioactive dye – and apparently it shows that her shunt valve and drain tube are working.
We managed to schedule and take a trip for another MRI and shunt-adjustment on Mar.28. Linda continues to have trouble struggling to be able to speak, but does manage to get some words out and for the most part, makes it clear that she does understand what is going on.
In early April, we will now watch and wait and see if she improves.
We look forward to the warm weather. I’ll be bringing her home via para-transpo for Easter, I’m sure and look forward to scheduling many afternoons to enjoy the tulips our gardener planted, to enjoy the sunshine, the birdies and the leaves in May!
I was offered a teaching gig in Toronto the week of Mar.13 which turned out to be March break for the kids, so we all went to Toronto.
The kids enjoyed staying in the Delta Chelsea hotel, swimming in the pool, playing computer games. They went out shopping to the Eaton centre several times and bought some running shoes and hoodie-sweaters with gift money from friends and relatives (thanks!).
My older brother, Gord came from Orillia and took them out for the day, to the sportsmans show at the convention centre. The kids got to ride on the subway and streetcars!
The kids and I went out for dinner different nights with our friends Linda and Keith in Brampton and with my cousin Katharine in Scarborough. So it was a nice, profitable little trip.
Many thanks to the multiple visitors that Linda received during that week, Ginette, Louise, Sue, Nathalie (forgive me if I am missing people). It was much appreciated!
Many thanks for Louise Rachlis, who in several visits has been helping Linda to draw lines with colored markers and together makes some pretty pastel pictures.
Trip to Civic for MRI scan and shunt re-adjustment, Mar.28
Linda and I did successfully take an ambulance to and from the Civic Hospital for Linda to have her shunt adjusted, yet again. It is now set at position 70 out of 200 which is about 66 percent open. The surgeon, Dr. Lesiuk, is reluctant to open it more.
As you may recall, despite many visits to the Civic hospital over the past year for a CT or MRI scan and adjustment to open the shunt wider (at intervals usually of 6 to 8 weeks), we had seen no change in the volume of fluid on Linda’s brain (the pressure is unknown). I had finally convinced the surgeon, Dr. Lesiuk, that there must be something wrong.
When I talked to Dr. Lesiuk on Mar. 3, he claims that the shuntogram showed that there is nothing wrong with the shunt, that the radioactive dye they injected in early March did show flow into both the brain, and down the drainage tube into Linda’s abdomen. Yet I continue to question why she has more fluid in the ventricles, than 8 months ago in August, despite the fact that he shunt is now 66 percent open rather than 5 percent at that time. We are told
based on the Mar. 1 tests that the shunt is working. How is that?
This is too much water on the brain. The ventricles are usually much thinner slivers of fluid in most people.
In one way, this is good news in that if the shunt is ‘working’ then Linda will not require surgery in the coming months.
What it means is that I hope that Linda will show improvement these next 2 weeks. I continue to hope and pray after each adjustment, that we will see her perk up and be able to start talking again if the pressure or volume of fluid is reduced.
What else to do? The surgeon, Dr. Lesiuk, is supposed to contact her ‘continuing care’ doctor (Dr. Hudon) at the Saint Vincent hospital. (Good luck getting hold of him, I will become increasingly demanding to hear that they have talked). I have asked that they do something by reviewing the drugs she is taking.
Linda is receiving Dilantin each day. This is necessary to block brain neurons in damaged areas from firing and causing convulsions – a bad thing. And to my knowledge, she hasn’t had any convulsions in the past year (she did in March 2010 and it was debilitating, hence the increased use of Dilantin). But this drug has known side effects and may be a depressant. I am told that there are different, less disorienting drugs that are given to children with hydroencephaly/brain-surgery that may have less effect. Dr. Lesiuk has some suggestions for other drugs to try. Thanks to Dr. Natalie for suggesting this.
We are also giving Linda a modest amount of Celexa starting after Christmas (Linda had declined dramatically during the month of December) in hopes this would help her ‘integrate’ the different parts of her brain, which in my opinion, was manifesting as ‘multiple personalities’. This may be having an effect that we can improve by reduce or increase the dose or change the time of day it is given.
Other questions I have for Dr. Hudon @ Saint Vincent
I have been having difficulty having a rendezvous with Dr. Hudon who only arrives on Wednesday and Friday. I have left messages with him for the last 5 weeks for him to call me, to no avail. I will soon be contacting the hospital administration if I do not hear from him.
Linda has MRSA in the bed sore wound at the base of her spine and it is not healing. What is the current status? This could be sapping her energy. Did he try the suction procedure in November? Could her stellar improvement in November have been caused by something they tried then?
Linda’s demeanor could be affected by which side she is on when she is sleeping – the mechanics of pressure inside her brain could affect her. I find that the staff is lying her facing to her right more often that to the left. If she is facing left, I find her perkier.
Is there anything else that changed or was done in mid November that could account for her peak of activity, her ability to talk for up to an hour! on Dec.1 and complete decline during November and inability to talk ever since?
I have requested that Saint Vincent assist me to schedule an appointment with someone who has a machine that would be able to measure Linda’s eyes and determine whether her eyeglasses are even remotely valuable or whether I should get new ones with a new prescription. When I put her glasses on she sometimes claims she can see better and other times, not. I think she may be quite distracted when things come into focus and be concentrating on what she sees and is definitely unable to talk much when her glasses are on.
Physiotherapy Linda’s physiotherapist has now scheduled three days a week: Tuesday, Wednesday and Thursday – and believes that making 3 days in a row will at least help linda to make some better progress than having a day’s gap on Wednesday like she did before.
She is now scheduled to be out of her room on Tuesday at 11am, Wednesday at 1:30pm and Thursday at 2:00pm….
It means that visitors may not find her there if they visit at these times. Unfortunately, I do not find that this is always happening. On Thursday, I was trying to find a nurse to put her in her wheelchair prior to 2pm and the nurse said she couldn’t find the ‘porter’ to help hoist her into the chair, that he had disappeared. I had to leave but I am under the impression that they eventually showed up, wheeled her to physio too late, and were rejected. I will certainly be a little more proactive and encourage the staff to be proactive rather than having 3 times a week end up being only one or two, because they’re not organized.
I expect in the short term that Linda will not be as responsive to physio as she will eventually be. We’ve got to address the water-on-the-brain and the drugs and get her to be much more responsive before she can make progress with physio.
Who knows why she perked up in late November. I was speculating that the shunt was working temporarily until being blocked again It was a sign of great hope. Well, now I do not know what to think. I still have great hope for the longer term. Perhaps by May or June, her shunt will finally work, she’ll finally have less water-on-the-brain, we’ll have her off the Dilantin and Linda will be much better. I will continue with faith, hope and love. Linda and I will not be giving up. But we sure have to have a lot of patience and must keep up the pressure to get anything done…
Linda is in room 3502-2 of the Saint Vincent (Bruyere) Hospital listed under Linda Rainville-Wagar and the best times to visit seems to be from 12:15pm to 2:00pm and perhaps 5:00pm to 6:30pm.
She is now scheduled to be out of her room for physio on Tuesday at 11am, Wednesday at 1:30pm and Thursday at 2:00pm for about an hour each time.
Unfortunately, there may be some days and times when she is sleepy after lunch and physio and previous guest. At this time, she may not be too talkative.
The good thing about Tuesday through Thursday though, is that she may still be in the wheelchair, if you get the timing right and you could go to the Atrium.
Linda is in room 3502-2 of the Saint Vincent Hospital on Cambridge St, just west of Bronson at Primrose (one block north of Somerset).
Those who are driving down Bronson north and turn west on Primrose Ave.
Two blocks down on the right is the parking lot which is not cheap and often crowded during the day. You may need to leave your keys. You’ll have to find the Pay-Ticket booth near the rear entrance of the hospital, and pay before leaving. Often it is broken though. If you can park on the road, that may be best to try, first.
I set up a ‘Linda Calendar’ on the web so you won’t discover Linda’s not there. She has physio at 11am Tuesday and Friday) . Maybe we can continue to use this.
So please Click on: http://cal.lindawagar.com/Lists/Lindas%20Calendar/calendar.aspx?CalendarDate=7%2F24%2F2010
So people could get an idea of who is going and even ‘book’ a time slot (if you click ‘Sign in’ in the upper right and login as ‘visit’ with password ‘abc’ you can even add your own slot.
If you need to reach me, it is best to send and email at firstname.lastname@example.org , but you could also leave a message on my business line at 613-737-7327 main mailbox or leave a message on my cell phone at 613-818-8898.
There’s still not much room for gifts! I put overflow items on the window-sill.
See Linda’s quilt hanging from the wall! It’s not easy to miss…
Once again, visitors are encouraged to look for the little blue/gray ‘personal-listener’ microphone which will help you hear Linda if she’s whispering.
Again. Thanks VERY much for all your encouragement, prayers, positive thoughts, gifts and visits.
I hope some of you will be able to visit and if you have time, send me an email to let me know how it went.
Thank you once again for all the encouragement and prayers, gifts and visits this past year. I hope you have a great little holiday and next year is a great one for you! Cherish your family and friends. My experience these last 18 months is that Linda’s recovery, while slow, has its miraculous elements that we can all be thankful for. I am thankful for the 25 years of wonderful times that Linda and myself were blessed with, the blessing of having our kids and our experiences with and through them. Despite some ups and downs over the years, it’s great that we have a foundation of many gifts to be thankful for, a foundation of happy memories. In a way, Linda’s accident has allowed all of us to remember what is truly important.
Things are hard at times, but I’ve come to recognize that everyone’s been given a variety of challenges, some much worse than mine. Linda’s current challenge is a bigger one to bear than mine. All I can do is support her as much as I can. The kids and I are surviving, and living a ‘new kind of life’. I will surely stand by Linda’s side in faith, hope and love as she recovers and surprises us all! Onwards!
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