Hi Mom, Still behind as I noted yesterday, but it's still Tuesday March 15th, as I also noted yesterday.
In considering what I should share for my 250th blog post to you, Mom, I decided to go with some T-shirt blog content, as I do not have time to do anything more significant, and this is a very good entry that I have not yet referenced.
You know this stuff, Mom, but for my two readers, this may be new stuff.
This is a significant time because it was in early March (3/7 was when she admitted to be precise) that she was admitted to the ER. So, today, 16 years ago, marks a day in the middle of the coma episode before the surgery, which she had on March 21st 2000.
Here's the story that was originally T-shirt #283.
Subtitled: How Harry Potter books saved my life - dedicated to my mother, Marjorie (Delbridge) Tower
Harry Potter saved my life.
No kidding. There's a story here, but first some shirt background. When I started this blog, I did not own any Harry Potter T-shirts. Nor did I own any shirts featuring Planet of the Apes, Star Wars, or The Songs of Ice and Fire. I must confess that if I am listing favorite things, I am still without shirts featuring Lord of the Rings or anything Tolkien, Asteroids the arcade game, or Harry Houdini. However, I am proud to say I now own THREE Harry Potter shirts, two Star Wars shirts, one Planet of the Apes shirt, and two shirts for the Songs of Ice and Fire. So, since I have two more Harry Potter shirts to share, this post will be short on Harry Potter content. After the story of how Harry Potter saved my life and a few fun facts, I was going to share some more reviews of books, movies, and comic books, but I will save these for another day, spread them out throughout the week. Today's story will be content enough.
What else do I have to do to fill up my days? And it's (writing the blog) fun for me. I hope you find it fun for you, too.
Okay, onto my story of how Harry Potter saved my life.
Though Harry Potter and the Sorcerer's Stone was published in 1997, I did not discover the books until March of 2000. I was visiting my friend Tom in Connecticut where he lived at the time, and we were in a mall. I saw a display of the Harry Potter books published so far, at that time, the first three, and I remarked on the elaborate window display for a book series I had not heard of. Tom emphasized that he and his family had found them delightful, and I should read them. It turns out that at the same time my mother bought all three of these books for my cousin Julieanna as a gift. When I returned home from my vacation, the books were sitting out in a neat stack on the big counter in our dining room, awaiting the time my mother would wrap, package, and mail them to my cousin.
Normal procrastination was not causing my mother's delay. She was ill. When I returned home from my vacation, my mother had recently been to the ER with intense pain in her head, not like a headache, but in the back of her skull. She was sent home with pain drugs and an appointment for an MRI. If we had only understood what was happening to her. If the doctors who had seen her originally had only run the right tests. We always knew my mother was sensitive to pain drugs, so when she started having trouble moving, so much so that the stairs from the first floor to the bedroom were too much for her and we set up a recliner in the dining room for her, we chalked it all up to sensitivity to pain medications. When she was unconscious for most of the day, I finally asked if this could be due to some other cause. In other words, as outside observers, what would be the different between a coma due to some other cause and a drug-induced coma?
By the time we called for an ambulance, it was almost too late. My mother stopped breathing on the way to the hospital, her heart stopped, and the ambulance had to pull over so she could be revived.
She had bacterial meningitis and it was killing her.
She was in a coma for 11 days. Eventually, we had doctors perform surgery to drain an abscess and to repair damage to her spine. She spent three months in Bronson's ICU and three months in Mary Free Bed before she returned home.
Her illness forever changed our lives. Those were dark days in March of 2000. We almost lost her. I saw my father cry for (until then) only the second time in my life.
So what does this have to do with Harry Potter?
Well, if my mom had been well and awake, she would not have let me read those Harry Potter books sitting out and awaiting shipment to my cousin. But she was in a coma. And I needed something to distract me from the worst family tragedy of our lives. So, I removed the dust jackets from the hard covers and read the books while holding our hospital vigil. I also spent a lot of time talking to other people holding vigil, such as the daughter of a man who is now a life (for the rest of it, that is) long friend of mine and especially my father's: Dallyn Hoffman. His daughter was also reading those books while holding vigil for her mother, whose Lupus finally caught up with her. I can only hope that the Harry Potter books brought her as much solace and enjoyment during that terrible time as they did for me. My mother survived; hers did not.
Though my mother regained the ability to walk in limited capacity and only with help, the bacterial meningitis mostly paralyzed her. She has needed total care since 2000. She cannot dress herself. She has an in dwelling catheter because she cannot go to the bathroom for herself. And the brain damage is slowly catching up with her. Mini-strokes, scar tissue, and advancing palsy conditions are slowly robbing her of her ability to speak clearly and to feed herself. We constantly fear urinary tract infections and aspirating Pneumonia. And yet, my mother is very tough. She has survived thirteen going on fourteen years post-meningitis. The illness forever changed our family, but if there is any silver lining, and there is not really, it's that my family is much closer than we had been before this happened to my mother. And though she lost the use of her left arm and mostly lost the use of her legs, and though her health is compromised, she has had a very good life in many ways since the illness, and she could live for many more years to come. My father has shown himself to be an incredible care giver. I am amazed at what he does. Truly incredible.
Since those dark days of 2000, I have read all the Harry Potter books at least twice each and listened to the fantastic audio books narrated by Jim Dale multiple times. My favorite book of those first three is The Prisoner of Azkaban, and my favorite book of the set is The Order of the Phoenix. I have not yet seen the second half of the Deathly Hallows. More on this in a future post.
To conclude, those who are interested, and to make it all public record, I will present an edited version of the story of my mother's illness communicated in email reports that I wrote to share with loved ones while she was hospitalized.
STORY OF MY MOTHER'S BACTERIAL MENINGITIS
Here's the story cribbed from those emails from 2000. I added various pictures from before and after the meningitis. There are also two pictures of me with my mom in t-shirts I have not yet featured. Can you spot them?
MARJORIE TOWER STATUS-ICU DAY 05 - We took her to the ER last Tuesday (3/7) after she had passed out. She stopped breathing on the way to the hospital and then shortly thereafter her heart stopped. They revived her. She had another major cardiac arrest on 3/8 and some "funny heart rhythms" the next day.
She has bacterial meningitis and bacterial pneumonia.
This all began on 2/26 while I was in Connecticut. She woke on 2/26 with extreme neck and back pain, which is not unusual for her given her chronic problems int hat area. She cried in pain all night on 2/26, Saturday. Sunday morning, my Dad and sister took her to ER and after x-rays the docs diagnosed her with a herniated disk, gave her some very heavy duty pain meds (Lortab 10s) and sent her home. After 21 Lortabs in 4 days my mother was in what our family calls "Zu Zu Land" -- hallucinating. This was no surprise to us as even Valium puts my mother practically in a coma.
They took her off the pain meds and slowly she became more and more lucid. But she was still too weak to move about the house without assistance and had double vision and motor control problems so severe that she had to be fed. We all believed this to be the residual effects of pain medication and her reaction to it. I am still in Connecticut. Trying to return her to normal, Lori and Dad start giving her the bazillion pills she takes each day for her bazillion health issues. When I returned from CT, my mother still seemed REALLY out of it. She was falling asleep while eating or brushing her teeth or on the toilet and she still had severe motor control problems though her lucidity was all right. She seemed to fade in and out of Zu Zu Land now and confuse her dreams with reality, which again we figured to be the pain meds thing. While I was gone she had an MRI and saw her primary care physician.
|Mom at Richland Art Fair|
Tuesday (3/7) she seemed all right though still weak. We should have realized that how she was having trouble moving and using her left arm WAS NOT something that a reaction to pain meds would cause nor was her FEVER and a million other things. (Like I had to make a sign for her so she could remember what day it was.) Tuesday night while I was in class (6-ish), she passed out while on the toilet. My father carried her to the easy boy chair we had been using for her and she did not move for several hours. When I came home about 9:30, we began to discuss what to do. When we couldn't wake her, we called 911. The paramedics found her blood pressure to be normal. On the way to the hospital, she almost died and then she almost died again in the ER as I wrote initially etc. etc. Once they finally got her stabilized on Friday, after over 24 hours with no "funny heart rhythms," they felt they could disconnect her from the monitors, respirators, etc. long enough to do an MRI to learn all sorts of things. The MRI was normal. The blood vessels to the brain are all open. There is no sign of brain stem injury. No sign of stroke. etc. etc.
She should wake up. This may take many days as meningitis causes swelling to the brain and she may have had it since 2/26!! She started receiving antibiotics in the ER on 3/7 but none for bacterial meningitis specifically until spinal fluid analysis proved that's what it was on Thursday morning (3/9). Until she wakes up we will not know more. There still could be some brain damage. She still could be paralyzed. Some of the problems might only be temporary and "overcomeable." We just don't know. She has not made very many voluntary movements since she passed out on 3/7. She has some reflexive movements, though not enough.
Apparently involuntary reflexive movements are not proof of no paralysis.
So we're waiting. Spending all sorts of time in the ICU waiting room. We are usually home by midnight and then leave by 8:30-10ish in the a.m. It's a very very very difficult time. I have never been so scared in my entire life. I would trade places with her in a heartbeat. I just feel so helpless. Please do what you do in terms of prayer, good energy, whatever. I have been told that actually scientific studies have proven that the more prayers that are said for an ill person the quicker and better he/she heals. Doesn't matter who prays, to whom, how, whatever. Please, do what you do. love, chris
"if you lose your faith, babe, you can have mine
if you're lost, I am right behind
because we walk the same line."
-- Everything But the Girl "We Walk the Same Line" _Amplified Heart_
MARJORIE TOWER STATUS-ICU DAY 12
My mom is better and awake and improving.
Thursday the docs did an MRI and found two infected areas that they suspected were abscesses. If they were abscesses, they had to be drained surgically since they are walled off areas of infected stuff (pus) antibiotics would not reach them. However, if these areas were not abscesses but what one doc called "angry tissue" (IE. infected) then antibiotics would reduce their size and inflammation and so on. That's the best they can tell with the MRI. One was located in the throat, behind the pharynx, a retro-pharyngeal abscess (or not an abscess). The other is in the back of the neck in the top bones and vertebrae of the spine. The vertebrae disks and ligaments there are definitely infected and all but destroyed by infection, the bones are very very weakened.
The docs seemed pretty certain that the throat one was indeed an abscess, and so we okayed surgery for Thursday night. And yes, it was! An abscess full of pus. The doc drained it.
The next morning my mother woke up.
At first we did not know if she was 100% awake-aware. She still couldn't move. She mostly just had the left eye open and only opened the right once in a while and then only slightly. But later in the day and definitely Saturday, she was awake-aware, nodding in response to questions. She can't talk because of the breathing tube. Saturday, we were also concerned that she could not close her left eye because she still has some swelling because of all the fluids in her system.
Finally, last night, Saturday night, she managed to close both eyes and was obviously sleeping peacefully.
Today, Sunday, the neurologist saw her open and close both eyes voluntarily and wiggle toes voluntarily. Still no ability to squeeze hands with fingers or move arms, but these abilities may come back slowly. The neurologist was also pleased to see increased brain activity in an EEG they gave her Friday.
Part of her continued neurological problems could be caused by the infected area in the back of her neck. This infected area, be it tissue or abscess, is definitely putting pressure on her spinal cord and thus may be impairing her motor control from the neck down....though not the toes, for some reason. ;-)
My family has a giant decision to make. Surgery. An MRI yesterday showed whatever it is in her neck is not getting bigger or smaller. We had hoped that if an abscess, it was connected to the other abscess and would drain when that first one was drained. This is probably not happening. Taking pressure off the spine will help her to improve neurologically. And with the deterioration of bone and ligament and vertebrae there, she may need surgery eventually anyway to have any kind of control over her neck. But should she have it now or later? If that is an abscess back there, then she should have it now. If it's infected tissue, probably a little later, but not too much later. Tough choices. We will look at another MRI probably Tuesday and decide.
Still it's a long haul. We have to be happy with tiny little minor progress every day. We are keeping a constant vigil in the room and cheering my mother with stories and our love. But still it's a difficult time. Difficult to focus or work, though my father and I have managed to do some work...
Mom had the surgery Tuesday March 21st starting at about 2:30 p.m. I watched her fave soaps with her and then they took her down. First she was getting a trachea tube for the breathing machine to get the tubes out of her mouth, prevent further damage to the vocal cords, begin healing the sores on her lips, and to just make her more comfortable. When the ENT doc did the trach, he also drained her sinuses. All went fine. Then Hopkins did the neck surgery, taking off three and a half of the shell bones (2,3,4, and half of 5) in her back that protect the vertebrae and spinal cord. Two of these bones were "mushy," he said, from the infection. We've been trying to guess from that comment how long she many have had the infection, but it's hard to guess. There wasn't much pus in the abscess there, and so maybe most of it drained out the front. There was a lot of infected tissue, and so Hopkins cleaned out in there and sampled some for a culture. The whole process took several hours and Mom did not return to the ICU until 7:30-8-ish. Hopkins said the whole thing went swimmingly. She has stainless steel staples in the back of her very upper neck and had a drain for a while, but they took that out when no more pus drained. She now has a tube into her stomach and so has no tubes in her mouth. She woke right after the surgery and has been pretty awake and alert since then, except when too doped out on morphine or Benadryll, which they were giving her for a rash.
She can't nod to us anymore as she is in a halo collar, which she will have to wear for at least six weeks if not much longer. She may also require extra surgery to fuse cartilage (sp?) in her neck and to remove those bone spurs.
As of today, Sunday, 3/26, she started grimacing when Dad squeezed her hands, which is an EXCELLENT sign that feeling is returning to her arms and that she may move them soon. Rah rah!! ;-)
MARJORIE TOWER STATUS-ICU DAY 26
She continues to have feeling in her arms and has pain when you squeeze her too hard there. The blood pressure cuff that tightens hourly for a reading also causes her discomfort. But she's hanging in there. Still no voluntary movements in arms or legs but that will come in time, we hope and believe. Her vitals all look good. The feeling in her arms and legs makes us very hopeful that she will have fully restored movement and access to her limbs after much physical therapy. Her breaths have been reduced to four/minute and she's on 20-21% oxygen, which is room level, normal oxygen (what we breathe). We want her stepped down to two breaths/minute and thereafter none for an experimental time. That's what they do, I guess. They just shut off the breath machine and she breathes on her own without knowing that she's doing so. I mean, you don't have to be told to breathe. We had hoped they would do this yesterday, kind of a neat April Fool's trick. And if it was up to us or the respiratory therapists, it would have been done. The docs and nurses are FAR TOO cautious in this regard, IMHO. We plan to start making some noise if they have not stepped her down by Tuesday. The breath machine will not go away completely. So as not to stress her, they will keep it there and use it intermittently, work her back slowly to breathing on her own 24 hours a day. The good news is that she will be able to talk after her vocal cords heal (if they are swollen or bruised, we don't know). She may talk right away.
|My sister's wedding.|
There's my cousin whose Harry Potter
books helped me survive.
Yes, I sent them to her when I
was done with them.
I have theorized that up until maybe Tuesday or Wednesday of this last week she has not been 100% conscious. I think that before her surgery she was not all the way awake. She seemed to nod distantly and her eyes did not look very alert. She still had all that infected gunk in her system and her spinal cord was under pressure, so that's no surprise. But we think she is getting better and better. She usually hates it when we have to leave for the night. But we have started to read a book to her. This is a book by a fave author of hers and is a book she anxiously awaited for a year. She received it as a gift for Christmas but hadn't finished it yet since she never takes time for herself to do things like that, like reading, which she enjoys so much. We may end up reading it more than once, as we don't know if she is always conscious, but I don't care. Anything to cheer her up.
"if you lose your faith, babe, you can have mineif you're lost, I am right behindbecause we walk the same line."-- Everything But the Girl "We Walk the Same Line" _Amplified Heart_
COUNTDOWN TO THE END OF THE BLOG YEAR - 82 shirts remaining
- chris tower - 1312.29 - 11:54
Have someone give you a kiss, and tell you that I love you.
Talk to you tomorrow, Mom.
- Days ago = 252 days ago
- Bloggery committed by chris tower - 1603.13 - 10:10
NOTE on time: When I post late, I had been posting at 7:10 a.m. because Google is on Pacific Time, and so this is really 10:10 EDT. However, it still shows up on the blog in Pacific time. So, I am going to start posting at 10:10 a.m. Pacific time, intending this to be 10:10 Eastern time. I know this only matters to me, and to you, Mom. But I am not going back and changing all the 7:10 a.m. times. But I will run this note for a while. Mom, you know that I am posting at 10:10 a.m. often because this is the time of your death.