Tuesday, March 26, 2013

Home from Surgery

I have never been so glad to be home!

My Cranio Cervical Fusion Revision on March 14 did not go smoothly.  It was the most harrowing experience of my life.

There were several complications.  It started off with a difficult intubation.  Since my neck is already fused, I have to have a conscious fiber-optic intubation.  I remember the difficult process clearly.  They spray your throat to numb it, first.  Then, they try to put the breathing tube in while you're still awake.  It apparently did not go well.  My throat was really torn up in the process, causing a lot of inflammation.  Due to this inflammation, they had to keep me under anesthesia for 7 additional hours, after a 9 hour operation.  Being under for 16 hours was a really bad start.

I woke up at 4 AM the next day during the extubation, which was horrible.  But as much as my head and neck hurt from surgery, and as sore as my throat was from being intubated, my number one complaint the first day was my burning eyes.  By the end of that day, I had an explanation, which was that during the long operation, I developed corneal abrasions all the way across both eyes.  The pain was unbearable.  My eyes are still red and healing now, 12 days after surgery.

My POTS (Postural Orthostatic Tachycardia Syndrome- a form of autonomic dysfunction) got a lot worse after my long surgery.  There were multiple triggers for my POTS, including 16 hours of anesthesia, changes in medication, fighting off a virus, and a lot of sedentary time.  So, my heart rate and blood pressure became very unstable, with episodes of very high tachycardia and quite low blood pressure.  My heart is also very reactive to every movement I make.

The hardest part came days 5-7 in the hospital.  After making some progress in terms of moving around and starting to heal, I spent Tuesday through Thursday fighting for consciousness.  I never got a solid explanation for what was wrong.  Could have been severe POTS or a reaction to the pain medication (even though I only took pediatric doses of anything, and I've tolerated these meds fine in the past).  I felt like I was under a heavy blanket of fog that I couldn't get through.  These days were so long, and the darkest days of my life.  I felt my heart straining, with a constant feeling of palpitations.  There was a fear at this time that I would never fully regain consciousness.  The doctors really never explained what went wrong.  I kept telling my family that I didn't want to be intubated again, and I didn't want a feeding tube.  "No Tubes!"

Thankfully, on Thursday, late afternoon, I started to come out of it.  A substantial part of waking up was my husband deciding to give me my usual dosage of salt for my POTS.  They didn't give me this at the hospital.  I became a bit more alert and aware of my surroundings.  I did my PT.  I got the last of 4 drains removed that night.  I was released on Friday afternoon-9 days in the hospital.  Due to these complications, my family had to extend their travel plans.  We had expected to fly home by Thursday, but couldn't leave until Saturday.  So, flights had to be changed (which was incredibly expensive) and hotel and car reservations had to be extended.  I was just so relieved to be getting out, after thinking that this hospital stay may have lasted for weeks.

Our travel day was difficult.  Our flight was delayed, so we didn't get home until 3 AM (which felt like 4 AM to us).  The pain was intense.

Ever since Tuesday (4 days after surgery), I had to switch to taking only Tylenol for pain.  Any other medication could have potentially contributed to my reduced consciousness. The pain is intense.  The Tylenol brings it to a just tolerable level, most of the time.  The worst pain is where my old rods were removed (using all sorts of fun tools like bone saws and chisels).  There was a lot of destruction in those areas, and a lot of healing is needed.  I have a constant ache with frequent sharp pains in these areas.  The other major pain is from muscle spasms in the neck and shoulders.  This will take months to loosen up, with massage therapy and dry needling.  The muscle spasms cause migraine-like headaches.

Currently, my days are really unpredictable.  I'm still having trouble with: skull pain, muscle spasm, tachycardia, episodes of reduced consciousness, burning eyes, numbness in various areas of my body, and regaining bladder control.

My POTS is so severe that I require salt pills and water spread throughout the day (basically like receiving IV saline all day).  If I don't take the salt, my tachycardia gets worse, I get short of breath, my lungs start burning, and I tend to lose consciousness.  Thermotabs are the only thing keeping me going at this point.  Hopefully, my dependence will be reduced over the next few months of recovery.

With so many complications, it will take some time to see improvements to be gained from this terrible ordeal.  So far:
-Swallowing seems to be improved--I can swallow water without swallowing excess air, and I can swallow pills without contorting into strange positions.
-Pupil reflexes are sometimes improved.
-POTS is worse, for now.
-Migraines are the same--I've had 2 migraines since surgery--The first was day 5 in the hospital.  The second was our travel day and the following day.
-Pain and muscle spasm are worse, for now.
-Balance may be improved.
-Digestion seems to be improved--I'm still experimenting, so I'll update more on this once I know more.

Current plans:
Staple removal is this Thursday (just 2 staples where my last drain hole was).
Stitch removal is 2 weeks from Thursday.  (They want them in for 4 full weeks.)
No lifting of anything over 5 lbs. for 6 months!  It makes me feel completely helpless, but I'm not willing to risk the perfect positioning of this fusion.

I have been traumatized by this horrifying surgery, more than any past surgery.  I get a wave of nausea thinking about hospitals and doctors.  And I have an intense fear of losing consciousness again, feeling that I'll never be able to wake up.

So, I really hope this fusion last, because I'm not going back.  I refuse.  I'm too scared.  I spent my 20's having surgery, needing surgery, recovering from surgery.  I'm hoping to spend my 30's focused more on living.

Wonderful things about being home:
-I get to take my normal daily medications that they did not give me in the hospital, including my anti-depressant and my anti-anxiety meds.  I will never understand why they don't administer these meds in the ICU.  It's the most stressful time of your life, and your emotions get completely out of control without your daily meds that help you to stay stable.
 -I don't get woken up every hour of the night for: blood pressure checks, Heparin shots in my stomach, finger pricks for blood glucose checks, bright lights in my eyes to check my pupils, and medication that I definitely don't need to take in the middle of the night.  I get to sleep as much as I want, which makes my POTS more manageable.
-I get to eat real food.  Seriously, the first night out of the hospital, it was like a flavor explosion in my mouth!
-My dogs are here :)