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Monday, June 14, 2010

Home Sweet Home!

Although we were away from home to get "healed", it was so nice to leave New York City after a hellish week.  To see my wife, bleeding from the nose, eyes, and mouth, crying, screaming, shaking, thoughts of suicide, paranoia, visual and auditory hallucinations, images of death, monsters, dark, and fear (the list can go on) made me without a word to say to except that I couldn't believe how much she could handle.  For all the things she had to endure in a very long week sums up how much pain she has been in for a very long time and what she would do to make it go away.

Allison's back is quite sore from having an epidural for 4 days while she was having her infusion.  Headaches are becoming less and she is starting to have more mindfulness with each passing day.  Right now her pain is gone but feels "different".  Perhaps her brain has been so confused over the past 12-15 years she doesn't know how it is supposed to feel.  Only time will tell.

For all your reading pleasure, Allison wrote some of her own thoughts and notes while "under the influence" during her infusion week.  As typed by Allison using her Samsung Moment Android Phone, (plug for Samsung, she loves her phone,  "Greg is my Edward Cullen.  Everyday, he showed up with a smile that took my breath away.  It filled my room and my world.  When he breathed in, I could exhale and when he exhaled and I breathed in, we were complete, nothing else mattered.  He reassures and consoles me.  I wouldn't be able to do it without him.  When people say they are scared of the shadows or that there are monsters, believe them, they are real and they do exist.  I have never been so scared in all my life and am unsure if I will ever like the dark again or go into the basement for that matter.  Whatever you call it....God, good energy, vibes, aura, karma or meta-chlorian counts (for star wars fans), it doesn't matter because it is true and it exists.  People may think its nuts but Greg and I grew stronger this week.  In a way, it was a sick twisted second honeymoon.  You don't need things like money and going on trips...all you need is LOVE!  What I did learn is that love is the only priority.  As long as I have my family: Greg, Griffin, Bella, Max, Kirby, Mom, Dad, Tim, Sue, Gavin, Ronan, and friends too, nothing else matters.  If I can't worry...enjoy the things I can do in the company of th eones I love and that love me back.  Whatever happens, we have each other and Harry Potter books help along the way."

Please note that there were plenty of typos and grammar mistakes that were fixed.  Not bad though for someone completely out of their mind.

Friday, June 11, 2010

Day 5

Allison made it throught the night again but barely according to her as "nurse ratchit" was her nurse for the night. Allison was convinved and paranoid that she was trying to kill her by giving her the wrong medicine and tying a turnakit on her arm during the night.  Regardless, Allison will have a different nurse tonight.

The ketamine is up to 60mg an hour, which is enough to special k to make about 60 people feel "special".  Her pain is completely gone and is using a normal cotton sheet for the first time in about 12 years.  She has lotioned her left leg without any pain.  Tears have been streaming down her face quite frequently as she can't believe how she feels.  "If only it stays this way" she keeps saying.  Allison has stated that she has a new outlook in life no matter how much relief she ultimately gets after being taken off the ketamine.  "The only thing that I care about is my family and friends, I am a wife first, a mother second, and a daughter/sister, and friend next.  My career as a teacher completes me but that comes after everything else."

To get Allison through these past few days, I have been reading Harry Potter and the Deathly Hallows to her.  She tries to keep focus on my voice and words as "fairies" "demons" "ghosts" "monsters" and "bright colors and sparkles" float around the room at the same time.  These are just some of the things she tells me and will not let me in on what she calls "very very bad things".  One can only imagine what this can possibly be.  She has told me that she has seen explosions, fire, and death quite often.  I think it is because we watched the movie 2012 just before coming to New York.

Allison is in PT now for the second time today and all of her treatment team have never seen a ketamine infusion patient handle this as well as her despite how bad it has been for Allison.  She has set a new record at the hospital for getting the highest dose of ketamine while maintaining her medical well-being.  Most people have told them to stop the treatment while Allison keeps telling them to raise the does and keep it coming.  She is so scared that the pain will come back but it prepared to handle again if it does.  We thank all of our friends and family that support us if or when it does.  Let's keep our fingers crossed.

Something good comes out of everything.  No matter the end result, Allison and I have been brought even closer together, if that is even possible.  We have experienced this together.  We both know what is important in life; friends and family.  Stop fighting, stop complaining...enjoy what you have and don't take a single moment for granted.  Life to too short and way to precious to have resentment, hatred, grudges, and fear.  Love life, love friends, and love your family.

We are on our way home tomorrow as soon as Allison is medically cleared.  The ketamine will be slowly titrated tonight starting a midnight until it is no longer being infused, which will be about 5a.  She will then be off the ketamine for 5 hours and we will be on our way.  The recovery for Allison following this will be a good 4-5 days of needing to be on some anti-psychotic medication.  She will then slowly get her own mind back over the next week or two and hopefully feel "reborn"  She will still need some "booster" treatments in an outpatient setting in Dover at Wentworth Douglas Hospital.  This is all part of the treatment to keep the pain away.  By the start of the new year 2011, Allison will hopefully only need a 2-3 day outpatient infusion of ketamine for a 4 hour period, 3-4 times a year or less without being on any pain medication for the first time also in over 10 years.  We will be having a narcotic yard sale when we return.  Just kidding....although I know some of you were hoping otherwise.

The doctor has told us that the bill will be in the mail  Oh, we can't wait.  It sound s as though a couple more fundraising events will need to be planned and your all invited.  We cannot wait to get the hell out of here although every moment has been worth it in the long run.  We miss you Griffin and love you very much.  Hang on to the loose tooth, we don't want to miss your first lost tooth.

Thanks to everyone!  We love you all!
In hope and love, Greg (and Allison if she could write)

Thursday, June 10, 2010

Day 4 continued...

Allison is doing very well today. Her epidural site it a bot irritated due to the nurses putting tegaderm tape on her back after the lead was pulled. Here is Allison's exact quote, "Doesn't anyone read the f$#@%ing chart before they do s$#@! It says ALLERGIC TO TEGADERM!!!" Anyway, Allison has a bright red and raised rash and was given benadryl, cortisone cream, and an anti-itch drip into her IV. Her itch is gone!

Allison is now again in PT singing the song to Driving Miss Daisy as she strolls along with her new best friend in the hospital. The physical therapist is adding a new component to her day which she looks very forward to seeing. Allison is still getting 55mg of ketamine every hour along with a stead flow of versed to help with side effects. She is becoming a pro at distinguishing reality from her fantasy world of ketamine. She is convinced that the people we know to have brilliant minds are really brilliant but that they were all high on drugs and were able to write down what they experienced during their "trip".

So, that pretty much sums up the 4th day. She is looking forward to finishing up and coming home to her family and friends. She is somewhat scared to return as well as she fears that the pain will return. It has been a crazy week for us to say the least. Allison is scheduled for discharge on this coming Saturday morning.

Thanks and Signing Off with Hope.

Day 4

My night ended last night with Allison at about 9p. She was given some anti-psychotic medication along with a sleep aid to help her get through the night, which worked well enough. The AH and VH were still present but not as commanding and intense. Allison even had enough of her wits to text me at midnight saying that she will love me forever. I told her the feeling is mutual.

So I arrived here this morning at about 1030a after fighting traffic again for the 4th day in a row. How do commuters put up with this everyday? Allison had her epidural taken out this morning and is doing some PT right now. She will try to eat a little bit and then rest for the rest of the day while the ketamine keeps running through her veins.

Her doctor is going to get the ketamine up to as high as Allison can tolerate today during the day. She is getting 55mg now every hour but will get up to 65mg. She's a fighter and keeps saying she wouldn't wish this on anyone. Again, thank you everyone for your messages and kind words. I will keep updating as much as I can.

Wednesday, June 9, 2010

Day 3

Allison has asked that I be as candid as possible, not to freak everyone out or to even get sympathy but more about letting people know what RSD patients go through while on this ketamine infusion.  So here goes....
Last night she did not sleep as she was terrified from the vivid hallucinations both auditory and visual.  Voices telling her to kill herself, etc.  She woke from her sleep throughout the night screaming in fear, not knowing who people are, where she is, etc.  The nurses had to explain to her several times that she needed to saty in bed or else the restraints would be applied.  Needless to say, Allison is exhausted.

This morning I arrived at 10a and as soon as Allison saw mw, she broke down emotionally for the next hour.  Since letting it all out, she has done relatively well despite her exploding nose bleed that she had when she sneezed.  Due to her nasal passages being dried out from the oxygen, the blood cam pouring out of her nose, mouth, and her left eye.  She stopped bleeding in about 10 minutes, avoiding possible surgery to stop the bleeding.  Between these events, Allison has had a little bit to eat and plenty to drink.  All of her vitals, blood work, etc. are perfectand the procedure is going well, despite the overwhelming side effects.

She has had PT twice today and is walking around without any pain in her body.  It is all about the mind games at this point.  There is no mind over matter when on ketamine.  Her doctor is set to lower the does a little tonight along with giving her some other medication to help her sleep a little more peaceful, hopefully.  He was also able to get approval for me to stay later to help Allison through these psychotic moments.

Day 3 has been an adventure.  Stay tuned for Day 4 info. as soon as I am able to get free for a few moments. Thanks again for everyones messages.  I am getting them and letting Allison know.  Keep the faith, prayers, adn positive energy coming our way.  We can both feel it and it is definitely helping.  Love Greg and Allison

Tuesday, June 8, 2010

Day 2

Allison made it through the night with some interuption for a quick "spray" bath and teeth brushing as she was a wake at 1am trying to figure out where she was.  For those wanting to know about a "spray" bath, she was spritzed with a cleaning agent that is used without any water.

So anyway, she was at 40mg an hour by 11am and feeling pretty good.  She has reached the highest dose for now at 50mg every hour.  The nurses have indicated that by this time tomorrow, Allison will be pretty much out of it.  She had her epidural turned off temporarily so she could get out of bed for the first time and walk around, which she did just fine.  It took about 15 minutes to complete the walk but Allison swears it was 2 hours.

The hallucinations come and go as do the emotions for Allison as the nurses have had to take care of her on all aspects of functioning as she is not allowed to get out of bed.  She is having a hard time dealing with some of these aspects.  We will keep it at that.

Allison's brother Tim came into the city yesterday and has given her some moral support as well as a few laughs which have helped.  We managed to sneak out (with Allison's permission of course, some things ketamine does not affect) for some lunch at Murphy's Pub just a block away from the hospital for some authentic buffalo wings.  I couldn't pass them up as NH and New England just doesn't get it right when it comes to wings.

Well, Allison is getting another "bath" now and will be trying to eat something for dinner shortly.  Her doctor saw her this morning and says that everything is going as planned and remains very hopeful for a pain free life.  WE SURE HOPE SO!!!

Thanks for everyone's thoughts and prayers.  We are getting them from Facebook even though we have not had the chance to respond to most comments.  I will update everyone tonight once I make it back to Long Island at about 9p or so. 

Monday, June 7, 2010

Day 1 Complete

Well, it finally came to an end with myself leaving the hospital at 830p and Allison trying to rest as comfortable as possible.  Due to the strict visiting hours, my time was up.  To paint a picture for everyone, Allison sort of reminded me of a cross between Keanu Reeves as he first enters the Matrix with all the cords hooked up to him and the scene in Avatar where the main actor enters into the chamber while being paralyzed from the waist down.  She had wires coming out of her back for the continuous epideral until Thursday and the 3 catherder tubes protruding from her neck all being pumped with medication including the ketamine.  Dinner made Allison's head turn sour as the hospital offered her green beans, squash, and turkey all with gravy covering it all.  Needless to say, she did not eat it and ate a 6 pack of oreos from the vending machine, which they didn't mind as long as she ate something.  Tomorrow can only be better, we hope.  Stay tuned.

Day 1 going slow

Well, lets just say it seems as though no one knows what they are doing here.  It is now 4pm and Allison has yet to get any ketamine flowing.  She is in the process of having a central line put in her neck instead of a normal  IV in her hand or arm due to continuing burning when the IV is dripping.  Her epidural is in a causing discomfort and pain in her hack although her legs are numb (at least that is helping).  SO the longer it takes to get this rolling the longer we will need to be here and the longer Allison has to go without food and water.  It's almost been 24 hours now without.  Her doctor is working on putting in the central line so in the next 5 minutes she should begin to start feeling better.  She is a trooper!!!

Day 1 continued some more

Allison finally went into the procedure room for a lumbar epideral. Once she get this injection she will start feeling pretty good and then the ketamine infusion will begin.  Her doctor has indicated that she will be in treatment until Friday evening or Saturday morning depending on how much ketamine she is able to get into her system.  The plan is still have the levels be as high as she can tolerate.  The more over a shorter period of time, the better the results.

Day 1 continued

Allison just got checked in. Vitals being taken and asked to squeeze out a urine sample. Too bad no one no one told her since she went when we arrived and she hasn't had anything to drink since yesterday at 9p. We need some waterfall sounds and maybe some dripping water sounds to make this happen.

Success, enough pee to pass the test. IV being set up. Allison is being very tolerant and patient even though the nurse is trying her best and failing. Maybe RSD should be taught to the staff taking care of their patients. We just need the ketamine to start flowing to ease the pain.

Day 1

We arrived at the hospital at 10a after fighting traffic for nearly 3 hours. Yes, it took us that long to drive 45 miles. We are still waiting for Allison to get admitted. At least while we are waiting, we get to watch highlights of the Celtics beating the Lakers last night.