October 6, 2014

Brain Surgery part 2

For Part one, follow this link

True to form, as I have done several times, I only spoke in Spanish after my brain surgery.  Not that I can even remember these conversations, but everyone else does.  Don't ask me what that's about.  I have no idea.

I clearly remembered my anesthesiologist name, who was the last person I had seen before surgery and had a crazy long name.  Like Dufenbergershlick.  I don't remember speaking Spanish, but I do remember the very surprised face of the anesthesiologist and hearing the assistant say, "wow, she remembered your name".

And almost as if I had perfectly orchestrated a joke, I scared a poor CNA to death.  I had a pre-op nurse named Elizabeth, whose name I also remembered after surgery.  As the post-op nurses (totally new to me) were wheeling me to the neural intensive care unit (NICU), I began asking (in Spanish) for Elizabeth.  "Things would be a lot better if I could just get a little water," I said to her.  But everyone was too stunned to answer.  The CNA, who happened to be the only one there who spoke Spanish, was also named Elizabeth.  She thought I knew who she was, or maybe had some kind of ESP.

A couple of hours into recovery, she reluctantly peeked into our room to ask if  I knew her.  I said no, wondering if I should.  She explained the whole thing to me and confessed it freaked her out a little.  Poor lady!

The neurosurgery residents came by and assessed my responses to toe-poking, finger counting, and speech recollection.  My results were good, and it appeared that the surrounding areas of my brain were unharmed by the surgery.  My blood work was promising and my Doctor said that all was going well and we could be released in as soon as 3 days.

My sweet husband was so kind and attentive, and a natural at unplugging the monitors and machines every time I had to get out of bed to go to the bathroom.  He stayed near through my long naps and my first bites of Jello.  He even got our 3 kids, who were staying with my amazing in-laws on face time.  I wasn't sure that I wanted the kids to be upset by how I looked, but I tentatively talked to them.  Unfortunately, the screen froze on the faces of my sweet kiddos right as they took in what Mommy looked like, and they looked so scared by me that I couldn't help busting into tears and losing it.  I wasn't sure I was ok, so Dan turned off the video and we finished on the phone.

I was probably overreacting.  For the surgery they went in through my nose, punched through the bone at the back of my sinuses, and accessed my pituitary that way.  But the pituitary is the master gland, and my hormones were all upset.  Not to mention that I had two shunts up my nose, a large gauze pad across and under it, and a breathing machine in my mouth.  I wasn't liking how serious it all felt.

On day two the Doc removed the nose pack, and gave orders against sneezing, strong sniffing, blowing my nose, throwing up.  Any of those things would stress the dura plug.  What is that, you ask?  During the surgery the membrane around my brain was nicked, which allowed CSF (cerebro-spinal fluid) to leak.  To fix that leak, they cut a bit of fat from my belly button area and re-purposed it by stuffing it in my head.  Not a pretty thought, I know, but the body tolerates that better than anything else, and doesn't reject the fat tissue.  I'm still a little grossed out by it, but hey.

Day three came and the head resident (there were about 18 residents on rotations every 7 hours, I swear) assessed my progress and said she was hesitant to let us go home.  Our hopes were dashed, because we wanted nothing more than to go home.  That day, one of the red-flags we were cautioned about popped right up.  I began to have a salty taste in the back of my throat, which indicated that the CSF was still leaking.  Try not to freak out about that: your brain fluid is leaking down your throat. Anxiety settled right in, though i didn't recognize it.

They tested urine and blood, and sure enough there was a bit of a leak, for which they kept close watch, gave me meds and kept us another day.  We were just hoping to get to the Neuro-surgery recovery floor by that point, and out of the NICU.

On the positive side, though, I was eating and my sodium levels were holding.  That's important because the pituitary is the part of your brain which receives ADH (a hormone) from the hypothalamus.  ADH is the hormone which controls water retention.  When your pituitary can't receive the ADH (from trauma, or say surgery) it can't retain any water, and suddenly your dehydrated like crazy but your kidney's don't get the message to keep the water in your body.  That's called Diabetes Insipidus.  Very bad. Our bodies are amazing and amazingly complex.  In later months I would find out that the posterior pituitary wasn't even cut or dissected.  It was just jostled.  That is all it took to cause all the trauma.

In the wings of my developing issues and side effects of surgery, was my wonderful hubby.  the day before my surgery, he was diagnosed with viral laryngitis.  He had a fever and his throat was on fire, his whole body ached, but he was so paranoid about getting kicked out of the NICU that he didn't mention it, didn't take his meds if anyone would see him, and swigged his cough syrup from a bottle like a sneaky drunkard, because he was nervous that someone would catch him measuring his dose.  He would rather die at this point than be separated from me when I was so bad off.  I still tease him about that.  He was so good to me, and luckily got better over the course of 4 or 5 days.

Fast forward to our release date.  I was still feeling shaky as to trusting that my body would act right, but was so excited to get home.  The doctors had decided that I indeed did have Diabetes Insipidus, and that I would need to take a drug through an inhaler called DDAVP until my pituitary healed enough to get over it.  The thing is, Diabetes Insipidus (DI) doesn't have any time frame for healing.  Indeed, many patients just live with it for their whole lives.

The thing is, that wasn't really ok with me.  Ha!  That's like a cancer patient saying she's not ok with regression.  You don't get to control these things.  But living with it felt like I was always one step away from dying.  I was peeing about 4700 ml every two hours.  That's more than 4-32 oz. bottles of gatorade.  I was drinking about 8 smaller size bottles of gatorade in that time and wasn't keeping up. And I was constantly thirsty.  People with DI have been known to pull over and drink from gutters when they find themselves without water.  The Endocrinologist warned me that I would need to have a drink literally at all times on my person.  It was unreal.

But I wasn't dying, just for the record.  And if you find yourself with a new diagnosis of DI, I assure you that you can get used to it, and your body usually calms down to a much lower output over time.  But I'd still carry a gatorade with me wherever I went.

After being home for all of one and a half days, I began to feel lethargic, my speech began to slur, and I knew something wasn't right.  My sweet mother in law was taking care of me and a friend happened to stop by to see how I was.  I'm so grateful she was there, because gauging myself against her I knew I wasn't ok.  And then she babysat my kids while my MIL rushed me to the ER.  That was nerve-wracking for her, I could certainly see, but she kept it together so well.  She was so calm with  me.

Unfortunately, my husband was only 10 minutes into his mid-term (which he had already postponed due to the extended stay at the hospital) when he got the call that I was crashing and being admitted into the local ER.  He randomly filled in all the bubbles on his scan-tron test, turned it in and ran to the hospital.  He ended up with a 90 percent on that test.  Tell me that wasn't a miracle.

Once the got a good dose of morphine in me (imagine slurred speech, crying and using hand signals to indicate what I was feeling, along with all sorts of apologies and the morphine seems pretty necessary) I slept through scans, MRIs and doctors conferencing.  I awoke to Dan making a joke about some nonsense, and I smiled, relieved that he was there.  My sodium was a little off, but mostly I was critically low on magnesium and a few other important things.  The endocrinologists discussed (at like 10 pm, mind  you.  Those guys must not get good sleep) and decided that I'd better be re-admitted to the hospital in SLC.  They offered an ambulance, but we said no thanks, Dan being very able to get me there just as fast, and thanking the Lord when the highway patrol man didn't stop him as he flew by.

At this point my anxiety over the whole health thing was in a bad way.  But I dealt with it without recognizing what it was, and my hubby and nurses really helped me.  I had one particularly wonderful nurse who sat with me every extra moment she could find and talked me through the hardest parts of the distress I felt.  Dan and I drew closer together too, as I never expected anyone to be so kind and unselfish to me.  He literally didn't go to get lunch without making sure I was Ok and settled.

In our church, we believe (as I've said before) in healing through priesthood (the power and authority of God) blessings (where hands are put on a sick person's head and a prayer said).  So my husband jumped at the chance to help when  he heard an announcement over the hospital's PA system that an Elder (the people who give them) was needed in the burn wing.  We were surprised and he rushed away to give a blessing to a young boy who was about to go into surgery and had requested a blessing and needed it right then.  There were 2 other guys who are also Elders in our church who showed up, and the 3 found themselves giving a very tender blessing to a very concerned boy.  In it, the other Elder who was saying the prayer mentioned an unusual scripture.  The boy was comforted, and when my husband came back to explain what he was needed for, he told me the scripture.  I had been memorizing that very scripture for 2 weeks before my surgery, as a way to keep focus and fear out.  I was humbled and comforted too by the connection, and reassured that God was still aware of me.

In one of my own priesthood blessings, given by my brother in law, I had a really sweet experience.  He is an experienced motorcyclist and  moto-vlogger, and an all around laid back guy.   I was desperate for some sort of hope on the horizon and mention of relief in the blessing.  It surprised me, however, when in my blessing he explained that things wouldn't get easier just yet.  Yet his simple words told me more about the Savior's compassion than I had ever understood.  And it was enough for me then.

Things didn't get better right away.  Among other struggles in the hospital, I had a vaso-vagal episode, where my blood pressure plummeted to 40/22, which is usually where you flat line.  The nurses ran to my room with a crash cart and almost used it when they realized what it was, and luckily didn't.  After 30 min. my bp returned to normal, and it was just another bump on the road to recovery.

My diabetes Insipidus slowly decreased to a more manageable place, and though  my anxiety was crazy by then, my body was slow to return to normal emotionally.  I was released to come home, and very carefully watched over.  It had been 2 weeks since the first day of surgery and I was ready to be home, and focus on recovery.

What came next was a very long journey to wellness.  Tackling DI was the least of my concerns, as insomnia, anxiety attacks, and learning how to be a mom again seemed huge challenges to me.   Life-changing lessons remained to be learned, and looking back (although I didn't feel it) I was in God's hands.  In hindsight, I realize that Providence led us to be exactly where we needed to be in those times, and with the people who would be so impactful and so needed.  God took care of every detail.  But you can never see such things when you're in the face of overwhelming difficulty, and it's taken me years to appreciate the truly amazing experience I had in my healing.

More to come on that in part 3 of my brain surgery story.

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