Thursday, April 12, 2012

Day twelve of Cushing's Awareness: Released from my chains

On Sunday evening one of the Neurosurgeon's came in and told me it was time to remove the balloons (nasal pledgets) that had been placed in my nose after the surgery.  Basically they put these tampon looking things up there and inflate them so they keep pressure on the wound area so that it could seal itself shut and prevent a cerebral spinal fluid leak.  They are extremely annoying.  You can't breathe, they put intense pressure inside your sinuses and overall they just stink.  I was looking forward to getting them out.  I had heard it could be pretty painful and that sometimes a lot of blood and ooze would flow out.  He deflated them and pulled them right out.  It hurt for a half second, but the only thing I could honestly feel was relief!  I leaked out some blood and gunk, but really it wasn't much at all.  I still however had no sense of taste or smell. I also got to get two of my three I.V.'s taken out.  I had one on my left hand, one on my left forearm and also had an arterial line in my right wrist.  I am so glad I was asleep when they put that one in, as that is the same type they tried to put in when I had my IPSS the previous year and failed.  I have three scars in that area, so I'm guessing it took them three good tries before they finally were able to get it in. 

As time passed I felt a little bit stronger.  I was able to shower daily and get up a little more to do my rounds around the nurses station.  I had the most lovely nurse on one of the night shifts.  I will never forget her. She was an angel on earth.  We talked about everything I had been through and she was just the most sincere and beautiful person. She told me about the other patient who's story was almost identical to mine and that she felt it would be a disservice to humanity for us not to meet.  She asked if it would be okay if I popped in and they agreed.  So, I put on my robe and hubby and I ventured across the nurses station and there I met a new friend and her sister.  They both have Cushing's Disease and her sister had previously had this surgery with Dr. McCutcheon, but was not cured.  I was in awe of meeting not one, but two people with Cushing's and they were siblings.  I shall refer to my new friend as "B." ;)  She seemed to be doing pretty good recovering and was going to be released that day.  I should have been released that day as well, but while standing there talking to them I started to feel extremely sick.  I broke out in a cold sweat and thought I was going to pass out.  I apologized and told them I had to go lay down and to stop by before they left.  

I don't really even remember going back to my room, but I think what happened at that point was that my cortisol crashed.  After surgery they want to see your numbers drop drastically.  It doesn't always happen though.  Honestly, I still haven't seen any post op blood draw numbers except day 3 and 10 and neither of those were as low as I would have liked.  I believe at that point mine plummeted and put me into adrenal insufficiency.  I also started experiencing something called Diabetes insipidus.  I was basically having more urine output than the amount of fluid I was taking in.  I know I was constantly drinking something after the surgery and the need for ice chips the night of the surgery was intense.  I couldn't get enough.  They decided I needed to be kept at least another day for observation.  I was glad to be there another night.  I didn't feel like I was ready to go back to the hotel just yet.  They had the most comfortable hospital beds on earth.  I have never had a hospital bed be comfortable, but these things inflated air in different areas every time you moved so that it was always maximum comfort.  I still want one of these at home! LOL  

The following day which was Tuesday January, 24th they decided I could most likely be released.  I went ahead and got showered and ordered my lunch.  While sitting there eating I noticed if I ate really hot soup all of a sudden I could taste and smell.  I was excited that my sense of smell and taste were returning, even if it was only a small amount.  This was a good sign!  They said it could have taken a month or even longer, so I'll consider myself lucky.  An hour later I was released to go back to the hotel.  It felt weird to be free after having brain surgery.  We went to the hotel and I got on my laptop then I started feeling icky so I laid in bed.  My hubby the saint went to do some laundry while my mom babysat me. lol  I told her I wasn't feeling well and that I was starting to feel really, really cold.  I fell asleep for a while and when I woke up I was absolutely freezing.  I was shivering and chattering my teeth.  When I stood up some blood started dripping out of my nose.  It scared the crap out of me.  My mom said I was snoring really hard, so hard in fact she decided to take a video of me!!!  grrr mom! lol   What do you expect?  I couldn't breathe out of my nose yet! I looked at all my release papers and it said if I spiked a fever higher than 101 that I needed to go to the E.R.  My mom and her hubby left to go buy a thermometer.  I was pretty sure I had a fairly high temp.  They came back and I was running 101.9.  Ugh.  I was a bit worried I had some massive infection starting in my brain or something crazy!  No one really knows what to expect when things don't go as planned after such a major surgery.  We called the emergency hotline for the Neuro department, but no one ever responded so we packed up in the car and went to the E.R.  They got me in fairly quickly, took a ton of blood, did a urine test and a blood culture.  They gave me some pain meds and dosed me with two different types of very potent antibiotics. They had me sit forward to make sure I didn't have a cerebral spinal fluid  (CSF) leak, checked to see if I was overly sensitive to light.  I was a little sensitive, but nothing too bad.  Then they hauled me off in the middle of the night for a CT scan to make sure I wasn't hemmorhaging inside of my brain from the surgery.  Everything looked as expected for just having surgery four days prior. 

Apparently since I had left earlier in the day the whole hospital had filled up with patients.  They were going to readmit me, but had no beds.  I spent the entire night in the E.R. on this horrible E.R. bed.  My back was killing me!  This isn't exactly how I planned on spending my night.  My mom had to catch her flight back home that morning as well.  I had to say goodbye to her while I was still stuck in the E.R.. She didn't want to leave, but I told her to go ahead.  I would be okay!  Everything checked out okay, but no one knew why I was running this fever.  Finally later that morning or early afternoon they had a room for me.  They opened up a floor just for myself and overflow patients.  I got an awesome room with a nice view.  They just kept me there for observation, gave me more pain meds and kept me comfortable.  The following day I was released for good.  This was Thursday January, 26th.  I was actually feeling pretty darn good that day.  The best I had felt in a long time.  Hubby and I drove around Houston a little and I saw a Whole Foods Market. I have always wanted to go to one, so we stopped.  I don't know what the heck I was thinking, but within minutes of getting inside I thought I was going to pass out.  I clung on to the cart for dear life and made it through most of the store.  I was determined I was going to do this!  I got some awesome chapstick, some coffee to take home and we left.  Later that night we went back out.  I didn't want my last night in Houston to be stuck in the hotel.  I'm not stubborn or anything, really.  We ended up going back to the Cheesecake Factory.  I went there two nights prior to my surgery with my Uncle and my cousin.  They had valet and an elevator so I could get in easily without having to walk far.  It was nice to feel almost human again.  I was alive and eating at the Cheesecake Factory and I had brain surgery less than a week prior.  Awesome!

The following day we flew back to Illinois.  I was a little nervous about how I would handle the airport and the flight.  I had to be in a wheelchair.  I HATED being in a wheelchair, however I knew I was not capable of walking around the airport so I grudgingly did it.  The pressure in the plane wasn't too bad.  My head was hurting a little bit.  I stress dosed with some hydrocortisone and everything seemed to be fine.  We made it back into Chicago and my dad picked us up to take us back home.  It was good to be back in Illinois and especially great knowing my babies were only a few hours away!  We stopped to eat dinner and then headed home.  My dad had bought us some groceries and stocked my freezer with meat and all kinds of other goodies.  Once we got home and got our car we took off to my sister's house to get my babies.  We didn't ring the doorbell, we just walked in.  My babies lit up like a Christmas tree!  It was heaven.  I just held them in my arms and sniffed them.  Everything I just went through was worth it in that moment.  I was alive and I was back with my babies.  We packed up the kids, all of their belongings and headed back home as a family. :)  I figured that recovery wouldn't be too bad at this point.  I was feeling pretty good minus some headaches and being a bit nauseous.  

I am forever grateful to my sister for taking such good care of my kids while I was away.  We were able to Skype several times during my hospital stay, but I cannot tell you what a relief it was for me knowing that they were being taken care of and loved as if they were her own children when I couldn't be there.  Thank you, Ash!  


  1. Hey that was me! Reading your version of the deflating of the balloons brought back memories - horror flashbacks. That was the most terrible thing ever. But so glad I got to meet you!

  2. Awww! I'm so glad I got to meet you too! :) I'm guessing yours hurt pretty bad coming out? Maybe everything else on me was hurting so bad I didn't notice it as much. LOL!

  3. Wow. Some really amazing writing about a deeply personal journey. And all shared unselfishly in the hope of helping someone else to find their own way on a little-traveled path... Just absolutely touching. Amongst all the eloquent words written here are these two: "Goodbye Cushings". What a fantastically interesting experience- and what a stunningly honest, AUTHENTIC account...

    1. Thank you for your kind words. All I want to do is spread awareness and hopefully help someone out there to find their answers a lot sooner than I found mine. If I can help just one person, it makes it feel as if I have had some sort of purpose to all this meaningless suffering.