B e g i n A g a i n with Jen

First of all Happy New Year to you all… and it was so nice to begin this project but as you can see, the holiday season and the pressures of recovery took me away from writing to you.

Know that I am still taking it one step at a time. 🙂

For today’s posting I am going to share the contents of an e-mail I sent to the Acquired Brain Injury clinic where I will soon be going for assistance with rehabilitation…

They asked for input into my areas of challenge. Here is my response:

“My problem areas are very clear to me:

I cannot manage telephone calls (too difficult to word find in addition to listening to a phone conversation – seems easier when I am face-to-face with someone). If on the phone I require to take notes or I will not be able to recollect the conversation. I also have to cover my eyes and plug the free ear so that all my focus can be with the phone.
I cannot manage distractions at all. I have had to ask the boys to line up to speak to me and if the dog barks or phone rings or I am trying to type something there is no room for anything else at all. When there is alot of stimulation I feel panicky and lost. It also makes me irrationally angry.
I cannot watch TV due to jumpy edits and rapid or frenetic content and I need silence to concentrate on anything (on a good day music can be tolerated). I have seen a movie with my Dad and enjoyed it very much so that was nice.
I cannot read due to distraction and even in silence I have to reread paragraphs many times to ensure that i can remember it for a little while. Similarly to the telephone call, shielding my eyes and blocking my ears helps to some degree.
I have a great deal of memory problems (short term and long term). My husband will have to tell me occasionally that we have already discussed something recently.
my visual memory is much better than recall for oral or e-mail conversations so i may not think i have been somewhere but when i see it I can recall it
I have many word finding challenges and work hard at it with strangers etc but am at ease with my family so I just say stupid things to them like asking them to clear the table put their doors (not dishes) in the dishwasher. We all laugh but it happens alot as the day moves along.”

So… what else is new?

In the interim including Christmas and New Years, I had an MRI, weekly blood work and other health care appointments. For those of you who understand INR (my weekly blood work) I am not yet stabilized. Last week I was down to 1.4 whereas a few weeks ago I hit 3.9 (the “safe range” goal is between 2 – 3). The number refers to the number of seconds my blood takes to clot. Too short is a risk for blood clots and too long is a risk for internal bleeding.

At my MRI, I was told that we all have two major drainage veins from our brain, my hemorrhage was caused by a blockage on the left drain… the blockage is still there. I will have another MRI to see if it has cleared within six months, if not, I am advised that it will be unlikely to clear. I am not too worried about that as there is nothing anyone can do and I am still alive!!! Anyway, there is still damage to the left side of my brain and my right side drainage vein is doing the work for both sides… (I will try to have the image scanned so you can see). The left side is entirely dark where the right side’s drainage is a lovely glowing white. 🙂

In addition to the medical side, we have had to cope with mortgage issues, banking challenges (by the way, our BMO advisor was an angel and has been helping us and advising us very well), employer paperwork, insurance updates, etc etc etc. None of this can be helped but it is a very draining process.

(I would also like to take this moment to thank my colleagues at Infrastructure Canada who sent me a most lovely gift basket with thoughtful treats. I miss you guys too!)
*** there is a PS note below to others who will receive private notes ***

My incision from brain surgery has not yet entirely healed but my hair is growing in around the surgery area… in contrast, my anti-seizure medication is causing me to lose my hair so i have been lucky that it started off very thick. Time will tell… hope you would all still love me bald (although I am exaggerating and don’t think it will get to that point).

OK that’s all I can manage for today but I will do my best to get in here to see you all as often as possible.

Many hugs and kisses !!!

Silly time at my computer yields silly results

Jen

P.S. To the friends and loved ones who sent notes or cards or gifts, I will do my best to get back to you each individually in a private way… but for now, please know that it brings me to tears when I feel your love and support through this trying time. God Bless you all!

Every person’s life has a story to share. My life is no exception… neither is yours. Here is the how the “stroke chapter” of my story begins:

Funny how we never know what is around the next corner. The family calendar was full, my relationships were complicated, my commitments list was long and I had settled into a new job. It was Tuesday, September 7, 2010. I remember that it was the first day at school for my three sons. In my mind’s eye I can picture the new backpacks, lunch bags, and “indoor” shoes for at school. They were excited and keyed up to get back to school and friends and classrooms.

My day sped by at the usual, intense pace. At about 4:15 in the afternoon I made it home at an unusually early time. I called the caregiver and told her I was home. I asked her to please send the kids back to me (she lives around the corner so they walked home). Yay!

At about 4:30 they barrelled in the front door. I remember having a very intense headache – terribly intense. That said, the reality is I don’t remember any of the rest of this day except for a couple of the moments I am about to share.

The older two sons (grade three and grade five) went and flopped onto the couch in the family room. The youngest (grade one) settled immediately onto the floor to dig into his schoolbag and retrieve the notes for me. At some point around this time, my headache had turned into a stroke. The boys tell me I kept asking them how was their first day, then I would look to the right and ask the exact same question again. They said they stopped trying to answer me but I kept asking (like a record skipping). Then I fell to the floor, landing on top of my youngest son, and was unconscious. They tell me that I was “shaking” and was “blowing bubbles” and some blood from my mouth.

The youngest got out from under me and the older two came over to see what was happening to Mommy. Immediately, my eldest son found the phone and called their Daddy’s cell phone number. My husband was in a grocery store at that moment picking up some items I had earlier called and asked him for. Unfortunately, he missed that call.

The boys were not convinced that it was alright to call 911 and were afraid they would get in trouble. While the eldest and youngest started to discuss who they should call for help, the middle son tells me he decided someone should be with me and despite feeling scared he came over to me and held my hand on the floor. He says my hand was very hot and sweaty but he held it until the seizure stopped. [Note: since this event, we have talked to them about the fact that they are allowed to call 911 and that there are many local family members, friends, and neighbours that they can call if they need help but I firmly believe things happen the way they were meant to. I might have missed my hero surgeon if I had gotten in on someone else’s shift.]

After about a half hour (according to the boys), my seizure had stopped and I regained consciousness and I got up off the floor and walked to a seat in the family room. I have a vague recollection of feeling dizzy and that unbearable headache was still raging. The kids came over to me in the family room. They were crying and asked me if I was okay and what was wrong with me. My answer was that I was “fine” and that I “just had a headache.” Of course, they were not convinced that I was fine at all… and I wasn’t!

About an hour later, Daddy arrived home and the boys descended upon him in tears saying how glad they were that he was home – something is really wrong with Mommy. They tried to describe to him what had happened. He came right over to see me. In response to his question I told him too that I was fine and that I just had a very bad headache. By this time, I was also somewhat confused and I was dizzy. In retrospect, I obviously had no idea what was happening in those moments deep inside my head. But see?!?! My body was trying to warn me about what was coming… like I said, I had 4/5 symptoms! sigh… back to the story.

My husband asked if I would have supper with them once it was cooked. I said yes but felt absolutely disinterested in eating anything at all. Then he asked me if I had taken a painkiller. I recall feeling confused and not knowing what painkillers we might have, where the painkillers were or if I had taken one. This was not like me. I excused myself to go downstairs and lie down. Moving around, I felt totally uncoordinated and felt almost like I was drunk and lost.

Some time later, he arrived downstairs to see if I would come up for dinner. I said yes and made it up the basement stairs but had no interest to even sit at the kitchen table, certainly not eat. I weaved into the adjoined family room and sat back in the chair. The kitchen was silent as everyone was aware that something was terribly wrong with Mommy.

The kids picked at their dinners and glanced at me periodically. I recall that my husband got up and came into the family room. He asked if I was going to eat – I said “no.” He said that I should at least drink water to avoid dehydration. I felt annoyed by his comments because it was hard to follow his conversation and I felt like I was just exhausted and wanted to sleep. My head was still raging with a headache that I just can’t describe. I thought I just needed to rest until the headache passed. I didn’t want to talk and I found his questions confusing. He suggested that I get into the bathtub to relax (one of my favourites). I accepted.

He assisted me to walk upstairs (by now I could not walk by myself) and I lay down on the master bed as he filled the bathtub for me. By the time it was full, he came to get me but I was not responsive on the bed and I had another seizure lying face down. He dialled 911.

Within minutes my seizure had stopped. The firefighters responded and were up in the bedroom with my husband and me. Soon after, the paramedics were on site and there was quite a crowd in the bedroom. The boys were settled quietly in the family room to watch TV as the commotion unfolded around them in the house. Such wonderful and brave little men!

The emergency responders had a ton of questions but by this time I was delirious and was not able to understand or respond. Fortunately, my husband was able to answer many of the questions and assist in their information gathering. It wasn’t long before they carried me out of the house and into an ambulance.

I am told it was a rainy evening – that there were neighbours gathered around on the street watching the commotion at our house. In retrospect, I know that this was one of my last moments outside in almost a month.

I am told that I was taken to the Monfort Hospital in the ambulance. My husband took the boys to his parents’ house and then drove himself to the hospital. I was evaluated there and also had a CT done.

At that time, they were knew that I was suffering a hemorrhagic stroke. I was very delirious, confused and unsure of where I was and why I couldn’t go home. My language skills were fading more and more by the minute. By now, I could speak but I could not easily understand others. My husband tells me that everyone would speak to me very loudly and attempt to ask me questions – needless to say that was no good. I wasn’t deaf… I was having a stroke… my husband was the best hope for answers to questions.

Very soon the emergency room staff decided that I needed to move to another Ottawa hospital – one with a significant medical team focused on the neurology specialty. They put me on a gurney and fastened me as a precaution for safety during the trip. Before we left the hospital, I had a third seizure. My husband describes it as the most violent of my seizures and that he was reassured by the medical team that although there was nothing they could do, I was restrained and would therefore not likely hurt myself. He describes how difficult it was to watch me in a serious seizure frothing at the mouth and biting my tongue. When the seizure finished they began the process to move me. He was cautioned about driving safely to the Civic Hospital so that he didn’t have an accident en route.

He tells me about the busy night in the Civic Hospital Emergency Room and that it took a long time before the ambulance could get me admitted to the ER. He was seated patiently in the waiting room and eventually was advised on how to find me in an inspection area.

I was happy to see him and I vaguely recall that – that is my last little bit of memory from this experience (I don’t remember very much about the experience). Likely, recognizing him was almost my only reassurance as I still did not understand what was happening or where I was. At this hospital I had further tests (MRI and another CT) and IVs in my arm – some more successful than others. I was not fully dressed and my husband tells me that I would kick my legs in the air and leave myself exposed (I was wearing only a hospital robe that I had on from the Montfort). Eventually he found a sheet to hold over me. At some point someone advised him that kicking my legs around was a common action among stroke patients. I rolled over toward him and was trying to sleep, my arm folded protectively over my chest. This caused problems with the IV and it bled onto my robe. The next nurse who appeared asked my husband where all the blood was from. He explained that I had bent my arm and the IV must be bleeding. What chaos. I can hardly believe any of this although I know it is true. I have absolutely no memory of this at all.

The on-call neurology surgeon came to talk to my husband (and me?) in the early hours of the morning on September 8, 2010. He explained what they had learned from the tests performed on me and that it was important that they quickly performed surgery to remove some of the blood that had amassed in and around my brain. My situation could easily be fatal so really there were not many choices. Dr, Sinclair and a couple interns sought my husband’s consent for the surgery and explained the risks of the operation. My husband – who is fortunately calm in emergency situations – listened to the explanation and signed the required permission forms.

At 11:39 a.m., my surgery began. If you are not strong-stomached, you may want to skip the next few paragraphs… (look for the line of asterisks to know when the surgery details have finished).

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My husband walked along with my procession toward the surgery area but he was stopped at the doors into surgery. He was told that he could come no further but that someone would come to advise him when there was news from my procedure. There are many moments as a stroke patient that you walk your path alone. This, too, was another part of my journey that mine … and mine alone.

To prepare me for surgery, my head was fastened into a device using a tool called a “halo.” It is a large, metal, circular device that prevents any movement of your head at all as the operation happens. Brain surgery is, of course, all about precision. The most minor movement could have terrible results so the halo ensured that I could not move during surgery. At this point, an incision plan was prepared on the left side of my head (above and around my left ear) and a path for the incision was shaved into my long hair (mercifully, they picked a path that spared most of my long blonde hair). The area was sterilized and the incision was made. There are several layers between the scalp and your brain. The first layers were incised with a scalpel and my skull was revealed as they moved aside my skin and layers underneath.

The next step requires a drill to make a series of holes in my skull which were connected (like dot-to-dot) with a saw. The piece of my skull removed, it was kept in a container with sterile water to ensure that the piece of bone stayed healthy.

The actual work on my brain was to remove the quantity of blood that had hemorrhaged on the left side of my brain (yes, this means at least one doctor touched my brain). He described the haemorrhaged blood as somewhat gelatinous; I guess my blood was attempting to clot. He then cut away a portion of my brain on my left hemisphere – he had to remove the part that had been deprived of oxygen during the stroke and was no longer viable. He also described having to use a drill to make a hole in my brain to allow some of the blood inside my brain to drain and thereby reduce the internal pressure of the blood. He also knew that some of the blood had pooled at the back of my brain but that would be reabsorbed by the body after surgery.

A CT scan of the left side of my head.
My titanium plates and screws holding my skull together
(I think it’s beautiful and looks like snowflakes)
P.S. the dark spot beneath is my left ear 😉

After this work was done, they replaced the piece of my skull. They reconnected that piece with titanium screws and several titanium pieces that are used to span the gap between my intact skull and the removed piece. Finally, they closed the layers of my head and scalp. There was a series of sutures underneath that were done with dissolving stitch thread and the top layer (my scalp) was fastened shut with staples.

The surgery preparation started at 11:39 AM, the first incision was at about 12:00 PM and the surgery was completed at some time close to 5:00 PM.

After surgery I imagine I would have been cleaned up to some degree, the “halo” removed, and I was wheeled into the Intensive Care Unit (ICU).

I was intubated both for breathing (via my mouth) and also for feeding (via my nose). I was also sedated to keep me unconscious after my operation. The medical team expected my head to swell (after all, it’s our body’s only trick to try and protect itself from trauma).

*******************

The surgeon explained to my husband how the surgery went and what the results may be. He was clear that it was too early to speculate on my recovery but he cautioned my husband that I may never again be verbal as the area affected on my brain was the area of the left hemisphere that had language ability. He also commented that there may be physical disability that may be serious but that the results would become clear over time.

I am told that in the early days after surgery, still sedated, my head became so swelled on the left side, I looked deformed and my left eye was swollen shut. In addition, my right arm swelled up and they worried that maybe there was a second clot in my arm (first one was in my head and had caused the stroke in my brain). Very soon, a technician arrived and did a whole body ultrasound which revealed no clot in the right arm but discovered a second clot in my right leg.

It’s hard to believe that all of this happened to me. I am very lucky about how I recovered and although I am certainly better than most of the medical team expect, I am disabled.

So this was the story of my stroke and how it ended (and BEGAN a series of recovery and coping chapters). In the coming days, I will talk about how I am disabled, how my sons have made out, how my husband fared.

Oh, and by they way, I have decided to take the weekends off from blogging (it’s very hard to write but I am loving the process – it’s only that on the weekend my boys are home so blogging then is only going to drain energy that I would prefer to give to them).

Happy birthday to my youngest this weekend – he turned 6 on December 4^th!

In and Out, Round and Round, Upside Down and Back

A New Year and a return to the keyboard

The Story of My Stroke

…it's never too late to BeginAgain. Join me on my journey as a daughter, wife, mother, crafter, planner, stroke recoverer and a Christian!