My dad was scheduled for surgery today to make his feeding tube "permanent."  The surgery was cancelled becasue something more urgent came up for the Dr.

In the meantime, my mom and brother spent most of the day with dad, talking to him, praying for him and just hanging out.  Late tonight, about 11 or so, just my brother was there and dad's eyes were open --no focus, but open.  He started to cough really bad.  then after he coughed my brother was sure he heard him wisper two words and his mouth was moving as if he was trying to talk.  He asked the nurse how this could be since he still has a tracheostomy in.  She said that if the trac was blocked then some air would pass over his vocal cords enabling him to whisper.  And she pointed out that the trac was infact plugged up pretty much with mucous. 

We are very excited at this small develpment and continue to pray and pray and pray.  Please pray for dad to fully wake up.

Thanks so much.

There is Hope..  There is always Hope.  Hold on to Hope until there is no Hope left to hold on to.  Then, and only then, let go, with grace.  God's grace.

I don't believe in coincidences.  I believe that God is intricately involved in the little details of our lives, when He chooses to be.  I don't know why He doesn't seem to intervene in BIG ways sometimes, but that is why He is God and I am well, not.  And it is always quite possible that He intervenes in a lot more BIG ways than we give Him credit for, because we don't see what might have been...

I was searching the internet looking for a story about a little boy who had suddenly woken up from a coma after 2 years.  I couldn't find the story, but what I did stumble upon was fascinating.  Of course knowing the internet, you have to check the credibility of your sources carefully --I learned that from a good pastor friend who is famous for sending back those sensational emails and kindly pointing out that it was just an urban legend afterall!  Thank you, Craig! 

My initial source was the "Guardian" a reputable Left (my husband tells me) British Newspaper  (Those two words can go together can't they?  Reputable and Left?)  Anyway, more importantly let me tell you what I found....

In 1999 in South Africa, a family doctor was responding to a families concern about their comatose son.  They were worried that he was uncomfrotable and maybe in pain.  He perscribed a sleeping pill, which they disoved in some water and managed to give him by mouth.  He quieted down and within about 15 minutes he woke up and started to talk to his parents.  He had been in a coma for years.  He was awake and lucid and could even joke with them.  After the drug wore off, he slipped back into a coma again.  They repeated the sleeping pill the next day with identical results, except that he also remembered the previous days conversation.  Amazing.  This had been accidentally discovered several times under basically the same circumstances.  Once in Texas aonther time in Britan.  And apparently Dr. Nels, the Dr. in South Africa has repeated the phenomenon with about 60% of the 150 coma patients whom he has given this particular sleeping pill to.  This story was in the September 12, 2006 issue of the Guardian and is very long.  But if you go to their site you can read all the details.  Search Coma and Sleeping Pill or Zolpidem and It should bring it right up.  I'll try to add a link later.

Anyway, knowing dad's doctors I didn't think the Guardian would be a substantial enough resource for them to even consider trying this, so I decided to search the medical literature.  Well, it was there, documented in several Doctor type journals!!!  I couldn't believe it.  When I first read it, I think my jaw must have been hanging open, as I was thinking this is too good to be possible.  And too weird too.  What I can't figure out is why every doctor of neurology isn't looking into this if they have coma patients.  The sleeping pill in question is Zolpidem, or Ambien in the States.  It is rather common here and in Europe and is considered to be rather safe as far as sleeping pills go.  The Medical Documentation indicates that even a whole bottle of these won't kill you although it would make you feel plenty lousy! 

So, I have armed myself with articles and abstracts, and am trying to get in touch with this Dr. Nels to find out how many of the patients he has tried it with have been a. stroke victims and b. in a coma for less than a year.  This drug has returned sight to a lady, given physical movement to one person, improved cognition in semi-comatose patients and woken up cully comatose patients.  The effect is temporary as they will slip back into their previous state when the drug wears off, but it is repeatable on a daily basis.  One coma patient has been getting his wake up (I mean sleeping) pill every morning now for 6 years. 

All right, how wild and out there is that?  We are reservedly excited to check it out a little further and give it a try.  It can't hurt.  Our big dilemna now is that while it is common in the States it is not available in Canada where dad is.  I found out it is legal there, although it is governed by the controlled substance board, it is just not marketed in the country. 

I am working on contacting Health Canada (like our FDA) and getting special permission to have it supplied to him at least for a trial at first. 

Here's the theory of how Dr. Nels and a nuclear Medicine dr., Dr. Clauss think this is working.  When our bodies have a Traumatic Brain Injury, the brain has a chemical called GABA (Gamma Amino Butyric Acid) which closes down brain function to help the cells survive.  They think that after a long time the receptors in the brain become hypersensitive to GABA which is a depressent and they don't wake back up --thus a persistent vegetative state.  Zolpidem is a GABA antagonist and these drs. think that by temporarily shutting off the GABA it allows the person to wake up.  Incidentally they have done brain scans prior to the administration of Zolpidem and after and prior to the drug the brain cells look dormant or dead.  Doctors would say a persistent vegetative state and this patient is not going to wake up.  After Zolpidem the cells look totally different and active.  THis is very facinating to me and gives me someething to pursue and something to hope for.  It is not a complete cure, but it is better than where dad's at now!  What we are not sure about is how soon, is 6 weeks too soon to try this, does his brain need to be shut down longer to continue to heal before it is woken up? 

So if you wish to pray for dad and us, these are some specific things you can pray about.  And thank you for caring, thank you for reading and thank you for praying.  May God's blessings fill your heart and life. 

I will post if and when we get approval to try this.

P.S.  Oddly, there was an episode of House last week that was loosely based on this drug.  they even referred to South Africa.  But they put an "Awakenings" (the 60s movie) spin on it, where the patient could be woken up but only once and that was it.  It was not like the case studies for Zolpidem but it was interesting that it was this week when I had just discovered this information.

God always knows what lies ahead of us.  I did not want to move all the way accross the country AGAIN, but my husband really strongly felt we should move to be closer to my folks.  So in June, Dad came all the way to Pennsylvania and helped us get rid of most of our stuff and load up what was left and move all the way to the West Coast.  (I know if anyone reading this helped us load up or unload, you may take issue with the word "most" in "most of our stuff", but it felt like it in the purging and it was at least half of our stuff :-).

Well, if you've read this far you're a trooper, so now I am going to give you some more details of dad's injury and progress so far.

As you have already gathered we have staunchely refused to "let him die" at every opportunity, and the blessing is that he has refused to do that too.  When he was first moved to the ICU, he was on a ventilator to breathe for him, a pace maker to maintain his heart beat, an IV for fluids and drugs, a feeding tube for food (Forgive me if anyone finds this offensive, but for pretty much crappy garbabe food.  YOu know in North America we start most people out on Corn Syrup with added synthetic "nutrients" and we potentially finish them that was 50 or 60 or 80 years later!)  I am not sure how anyone's body can really heal on that diet but we'll save ther rest of that story for later...

He was also hooked up to the ventrisculstomy (we call it the brain drain), and they had to regulate his usually low normal blood pressure with medications, first one to raise it, then a few hours later another one to lower it and then to raise it and then........

Well, after about a week it was obvious that his heart was maintaining a steady heart beat --his normal, on its own, so they took out the pace maker!  Then they put in a traceostomy so he didn't have to have the tupes going down his throat, but realized quickly that the ventilator was not supporting his breathing but rather just assisting it.  After about 2 weeks he was totally off the ventilator and breathing on his own 100%.  He kept the trac and they continued to support him with extra oxygen and they suction through it.  Next they realized that his blood pressure was normalizing on its own and he was off the epinephrine, to keep his blood pressure up.

Now they started talking about putting in a permanent shunt from his brain, to drain the blood and cerebral fluid directly to his abdomen to maintain a normal pressure in his head.  They gave us two options, pull it out altogether and see if he takes over normal absorption or dies, or do the shunt.  Well, on a Saturday morning, he was starting to throw up and the nurse rushed in to turn him on his side so that he wouldn't choke and in the process the brain drain popped out.  THe ICP (Intracranial Pressures --measured by the brain drain) had been really good for more than a week and so the doctor decided to just leave it out and see what happened. 

We were VERY concerned with this approach considering, if his body did not adequately absorb the fluid it would build up again in his head causing him to lose the small functions he was slowly gaining.  This was about 4 weeks into his coma, and the only thing keeping dad in the ICU at this point was the brain drain, so I know they really wanted it out, and to see what happened.  The only way to tell if the pressures were getting too high with out the ICP readings from the drain was to observe his physical responses. 

There are two scales used to evaluate the level of coma a person is in.  THis hospital uses the Glasgow Scale which goes from 3 at worst to 15 at best.  Dad was a 3 for the first week plus.  ANything less than a 3 is considered dead.  By the time of the drain popping out however he was getting readings as high as 6 some of the time, interspersed with 3s, 4s and 5s.  Due to the suddenness of the removal and the inconclusive determination of his pressures we asked them to watch him VERY closely and put the drain back in if there were any signs that his pressures were going up.  They put it back in within about 5 hours and the nurse (one of the few really defensive dranky ones) told us the doctor put it back in becasue we were so bent out of shape about it. (Oh well, it shows that you really need an advocate when you are in the hospital!)  Well, It was the day after that that he had actually spontaneously opened his eyes.  No focus or apparent recognition but open of his own accord.  We were very excited.  He was a 7 on the GCS scale. THe doctors made sure to inform us that patients with no brain activity i.e. in a "Persistent Vegitative State" can still open their eyes and don't get too excited about it.  A few days later they started shutting off the brain drain and watching the pressure (ICP) readings to see how dad was handling the fluids.  His pressures stayed good as his body took over yet another normal function, absorbing the fluids in the brain.  (BTW, our bodies normally produce about 10-20 cc's of cerebral fluid an hour and that is just absorbed, but after there is a brain injury especially with extra blood, it becomes too much for the body to handle.)  So by the later part of the week they took the brain drain out and moved dad to a regular ward in the hospital.

Well after just a day and a half on the regular ward, the nurses kept telling me (by phone cause I was home at this time) that his Glasgow Coma Scale readings were consistently 3s.  I kept telling them this was not good, and he had been consistently higher than that, and that this was a sign that his pressures could be going up.  Finally, I convinced his nurse to give me the doctor's number,  The Neuro surgeon said, he was now out of the picture casue the drain was out, call the regualr family doctor.  Regular DR was on vacation, call the oncall guy,  On call guy was home very sick!  I told the receptionist the situaiton and that I was convinced based on the informationthe nurses were providing to me that dad needed a Cat scan to either confirm increased blood build up or not.  I also, told her I was sorry the doctor was sick, but if he didn't handle this and call me back to talk to me I would raise holy @#$% at the hospital until I made sure that dad was getting the proper monitoring.  Afterall the drain had only been out for a day and a half and for his GCS to drop so much so fast was not good.  Well, the sick dr. called back and told me he had ordered the cat scan and they let me know the results as soon as it was done.  He said it was one of those calls that could go either way, but due to our concern he'd do the test.  THe cat scan turned out to be no change in fluid from the previous one earlier in the week -- a good sign, but why the change on the Coma scale?  We were worried.  I went back up there with the kids and finally realized the problem.  The nurses on the new ward had 8 patients each instead of 1 or at tmost 2, and they were not ICU nurses and were not doing the assessments anything like the assessments done in ICU.  When I did my own assessment basedon observing the ICU nurses and their explanations Dad was a 4, 5, or 6.  They still put down a 3!!!  IT was the difference in care and training.  Which made us feel much better and then worse.  On the new ward, the nurses are very friendly and fun and helpful.  But really really busy.  They hygiene is not good.  Dad gets edema terribly now becasue they don't have time to turn and change him except every 4-5+ hours.  We try to massage and move his limbs but it is definately not good for him.  He does get about 5-15 minutes of PT Physical therapy about 5 days a week, but that is really nothing compared to what he needs now either.  We need to start trying to pursue a remedy for this.

I have been researching all sorts of potential benefits for him although there have been no official medical discoveries for the treatment of coma patients in over 30 years. 

I did discover that Progesterone has been being tested on animals for 15 years and has a neurologic protective factor which helps prevent some of the damage in a TBI (Traumatic Brain INjury).  the first human study done on 100 TBI patients was just released and shows promising results but it is such a small sample they will be doing a larger scale study soon.

I also discovered a Neurologic Chiropractor  in Florida, Dr. Carrick who has woken 1000's of patients up from a coma.  HE is basically retired but I am working on finding someone who has had coma experience closer to us here...

I have also been looking into nutrient therapy and the hospital dietician (the good one --who is assigned to dad thank the Lord) agreed to add Cod Liver Oil, Acidophilous (sp?), Sardine Oil, and Garlic Oil to his tube each day.  THe first dietician was very condescending and said I'd have to bring in medical literature documentaing the efficacy of anything I wanted to give him!  THe one on his floor is great, she said, "hey, wouldn't it be just great if we could get him better with this stuff.  We'll show them!"

Dad got a Staph Aureus infection withing about a week of being on the new ward --no surprise.  So, back on antibiotics, and he was much more lethargic.  (I know how can you be much more lethargic than in a coma?  Trust me, there are levels to this!)  We didn't get to see him open his eyes the whole time we were up there the last time. 

The infection went away and he began opening his eyese again.  He has been opening them for a while everyday now.  I can't wait to see that.  It is still the 1000 yeard stare, but mom says his eyes are looking more and more clear.  There is no apparent communication, although one nurse one day said he moved his toes when she asked him to. 

So, we see lots of little rays of hope, but it is potentially such a long haul.  When I think about dad's life and the magnitude of his recovery it can make me (the unemotional one) burst into tears.  I have been driving dad's car, cause mom can't drive it and obviously neither can dad right now, but sometimes I just miss him sitting there in the passsenger seat reminding me when to shift.  ON the last trip we took together, I was teasing him that when I'm in my 60s and he's in his 80s he'll still be telling me when to shift!  He said, "I will not, I'm not telling you now, I'm just reminding you."  Or something like that!  I have this picture of my life, and it always includes dad being there, I can not even fathom him not being around for another 20-30 years.  I see him in my mind's eye standing proudly at my daughters' weddings.  I see him flying with my son in his Airforce jet --not sure how they'll pull that one off, but dad has always wanted to fly in one of those jets, he wanted to be a pilot but couldn't becasue of his eyes.  I see him putsing around on our little farm (the one we don't have yet but hope to eventually) helping us figure it all out.  And I see him sitting up with us at night drinking tea in his Burger King Mug with the spinny hamburger on the handle, spinning that hamburger and reminicing with us. 

If he loses this battle, I know where'll he'll be.  And I know he'll be holding Ethan or maybe playing baseball with him by now.  And I know I'll see them both, and Elizabeth too --one day. I am at peace with that possibility as much as  I'm not ready for that yet.  But I don't think he's going to lose this battle.  And I'm going to do everything I can to help him pull through.  I really have this gut feeling that eventually he's going to pull right through and wake right up.  I can also see him walking back into that ICU to thank the nurses and to tell off the doctors!  Okay just to show them he's better.  I really want to be there that day!!!!!

I will post one more part tonight.  Part Four is about the hope (actually a medical hope) that we have found...  It's a bit out there, but there is quite a lot of documented success.  If you know of anyone in a coma, this is worth checking out.

God is good ALL the time.

Euthanasia used to just be a word.  You know, have you heard about the "Youth in Asia?"  It was just a distant word, until we had to face it head on...

When dad was first put into the ICU (Intensive Care Unit) we had no idea of the statistics and had never even heard of this type of stroke.  This has been a huge learning curve for all of us in SO many ways. 

When got into town, we went straight to the hospital.  The kids handled our first "visit" with dad so well.  They talked to him, held his hands and sang and prayed over him.  We were a little worried that the trauma of it all would be too much for them, especially the 4 year old, but we have never tried to hide reality from them before and they (the older two) have been through worse and come out stronger on the otherside, so we took them right up there with us.  During our week and a half stay the ICU nurses were really good with the kids and us too answering lots of questions and allowing us in and out of there at all hours of the day and night.  They listened to us all sing and pray and talk and talk to dad just willing him to open his eyes for us.  There were only a couple of nurses who were really unpleasant, the rest were very helpful. 

Where we encountered the greatest oppression was from the doctors.  Right from the start they started pushing us to unhook all the life support and "just let him go."  They never once gave us a speck of hope, telling us they had "never seen someone in your dad's condition recover. Ever."  "No, I don't belive in miracles."  "It's cruel to keep him alive like this, what kind of quality of life is he going to have liek this?"  "Wouldn't he rather have you let him go than prolong this."  And on and on --even now it still continues.

We FINALLY figured out a few things.  1.  They really feel they have to give the worst case scenario, because if they are wrong and they give the family hope then they are liable.  2.  This is Canada, the home of "Socialized" Medicine.  It is a direct drain on the government's finances to prolong the life of anyone who does not have a high probability of a good recovery.  A 10% chance of a good recovery sounds way too expensive to a governmental medical system that is not even holding itself together very well. 

About 90% of the nurses were, as I would put it, "on dad's side."  They gave us stories of hope and encouraged us to keep talking, and singing and praying.  "He can hear you, I know he can." one nurse told us. 

Another nurse, when I told her that I was so frustrated with the bleakenss of the doctor's reports that they had NEVER seen someone in my dad condition recover, replied, "O yes they have.  They just can't tell you that."  She keyed us into the liability side of things.  She also told us part of her story.   SHe herself had been in a coma.  Her parents were informed that she would not live and if by chance she did, she'd be a vegetable.  (And yes, they really do talk to families of injured patients that way!), they refused to allow her 5 year old to say good bye to her as they wheeled her into the emergency surgery, where they expected her to not come out alive --or at least as a vegetable.  She told me that that is the one thing she will never forgive that neurologic surgeon for.  I don't know how long she reamained in the coma with her parents fighting for her life, but now she works as a nurse on the floor where my dad was eventually transfer too, and she is our greatest ally.  We are working on alternative treatments and anything that we are confident will not be harmful and could potentially be helpful, that the doctors won't agree to --"She'll help us out with that!"  So far they have agreed to the first 4 things we presented them with. 

We will stay the course on preserving my father's life and praying for his recovery.  The road could be long, but my disabled mom, who is struggling a lot without dad there to help her, has been to the hospital every single day to visit him since he got there.  This is the same mom who used to get out 1-2 times in a month if it was a good month. 

I told you dad was working on finishing the downstairs renovation.  Well that first week and ahalf in between spending time at the hospital with dad that's what we did, tried to finish up the little bits we could of what he had been working on and move the stuff from downstairs upstairs and move what mom needed from upstairs, downstairs.  This was enough to move even the strongest of heart to tears, as my dear mom is an extremely sentimental packrat!

I will continue in part three by telling about dad's progress so far.  Thanks for reading so far already. 

It's Amazing --How One Tiny Blood Vessel Can Throw So Many People's Lives Into Complete Disarray...

Part One...

Warning:  This will be rather long and somewhat emotional --it will also have some medical details.  If you don't want to read it all through, our family will covet your prayers for my dad's complete recovery and our strength to help him and to continue to fight a very euthanistic system. 

My mother's health has not been good for quite a few years.  My brothers and I have tried (as much as one can prepare) to prepare ourselves for that dreaded call in the middle of the night from dad. ....

Well in the wee hours of the morning on Thursday September 28th, our phone rang and I stumbled out to the livingroom in a half awake state.  On the phone was my mom, calling close to paniced, but loaded with adrenaline to let me know that the EMS (Emergency Services) --about 12 of them she thought were "hauling your dad out of here in an ambulance right now."

This is my dad who is never noticable sick.  As mom says if he does ever get anything, he just has to wiat a minute and its over and he's back to his usual activities.  We realized neither of us had ever even known of him to take a Tylenol, he is always well. 

My mom is pretty close to being a shut in, because she can walk a bit but can't do stairs and they live in a townhouse upstairs.  Dad was in the process of helping to finish a handicapped accesible renovation in the downstairs so they could move down there and at least mom could get outside.  He had spent Weednesday painting a ceiling and then had gone out to eat with mom at my brothers' home.  They had a nice time and came home and as dad was falling asleep in the recliner he kind of mummbled, "no one ever thinks anything can be wrong with me."   Then around 4:30 in the morning mom was in the bathroom and heard him throwing up.  She didn't worry too much cause he never gets sick, but came out a couple minutes later to find that he was not really breathing and she couldn't wake him.  So she called 911. 

It turns out he was choking on his tongue, becasue he was having a stroke.  She feels so badly that she didn't figure this out and give him oxygen.  She did try to lift his head cause she thought he'd been throwing up, but could not. 

My brothers got there almost as fast as the ambulance and beat the ambulance to the hospital. 

First it was a stroke then they told us an anerism, then they weren't sure we'd have to wait, but "if I (who live about 8 hours away) wanted to see him alive again I better get up there RIGHT NOW."

We threw our wet clothes out of the wahser in a laundry basket, got the kids together quickly, they were all up by now, and then realized our van's check engine light was on, and we had absolutely no money to fix it.  We called our cell group leader from church, he suggested a mechanic to go to for such an emergency and siad he'd pay for it until we got back and got Kevin's MIA paycheck.  We rushed over there and it was an easy fix and were on our way.  I thought about flying but to where they live it really wouldn't have been that much faster with changes of planes and what not.  We got pulled over within 20 minutes of leaving by a state trooper and I (non-emotional being that I usually am) burst into tears and told him why we were doing 20 miles over the speed limit.  He told us dad needed us to get there alive and slow down and did not write us a ticket --thank the Lord.  We slowed down just a little.

We were out of cell phone range most of the trip, but stopped and called from a couple places along the way. 

It turned out that there are a variety of ways that a body can have a stroke and my healthy father's brain chose the worst option.  He burst a tiny blood vessel deep in the right lobe of his brain, in the Thalmus region causing a lot of blood to go all over the place doing a lot of damage. 

By the time we got there he was in the intensive care unit, hooked up to a lot of machines.  They had done an operation to put a ventriculostomy into his head to drain out the blood and cerebral fluid and try to relieve some of the pressure.  We were superficially relieved to see that they managed to do the operation without sacrificing too much of his long hair that he is quite proud of.  He looked so helpless lying there depending on all those medical machines for his very life.  They told us his diagnosis an "intracerebral hemorrhagic stroke" causing a severe Traumatic Brain Injury.  I never heard of this kind of stroke, only the kind where there is a blood clot that stops the blood and thus oxygen to the brain.  Hemorrhagic strokes account for about 17% of all storkes and have a variety of causes.  THis type of stroke is more common in younger stroke victims and has a very high mortality rate in the first 30 days.  Statistics told us that if a patient survies the first 30 days they have about a 10% chance of a reasonably decent recovery!  That is what we are still going for.