I left for Seattle, on Sunday June 1st at 8am. Being to the airport that early is too much. But the flight was pretty good and it does go by fairly quickly, considering it's a 5+ hr trip. My mom also arrived into Seattle about an hr before I did. Hubby and MIL stayed home with the kiddos so they wouldn't miss anymore school! Again it was sooo hard leaving them. Worrying about the plane and making sure it got there safely and then how I'd do with the surgery itself was VERY worrisome. I don't want to leave my kiddos... But they were fine and I had things lined up for them during the day, even aside from them still finishing up their last few weeks of school. It wasn't til the night time hours that it hit them I wasn't there. Talk about guilt when I talked to them though!!
Sunday was fairly boring. The car service didn't know where the hospital I needed to go was and I ended up paying more for that fare than planned. We checked into the Inn in the hospital and got a nice corner room. It was a TAD bigger than the last one. No view of the Needle this time tho. We vegged out in the room and then got lunch. Then we went back to the room, played a little Rummikub, got dinner and back to the room. I was lucky enough to meet one of the gals from my Cushings message board at dinner. Her and her hubby were there going through all this too. We were to have surgery on the same day oddly enough!! She was still going through some testing too. In any case, mom and I were in bed an asleep though before 9pm. Remember, there's a 3 hr time difference from the east coast to the west!
Monday morning I got up bright and early. I had my appt with the endocrinologist - Dr. L and the neurosurgeon Dr. M at 9am. I also met with other staff to finalize paperwork and whatnot. I went through the whole procedure and what to expect a few times. I was there til about noon. Then mom and I went to lunch and then had to get my PICC line in around 1pm. Unfortunately, the nurse that did my PICC line had to do it twice as the first line seemed to get stuck and would not go up the artery. So she moved over a bit and was able to put it in the second time. Then we went back up to the room to rest. And of course play another round of Rummikub - which I managed to win again. :) We were supposed to go out to dinner with my surgery buddy and another gal who was coming up for testing from the cushie board, but it didn't pan out that way.
My surgery buddy had some weird results on one of her tests and had to go back in to do the IPSS again. My other cushie buddy was staying with a friend and couldn't meet us til late. Being off times, we just couldn't meet too late. So mom and I decided to do dinner on our own outside of the hospital. We asked the gals at the admitting desk and one of them wonderfully decided to go with us on the bus to Pikes Market Place and show us this nice restaurant. It was so sweet!! We got off the bus and walked down to this restaurant called 'Cutters.' It was a nice seafood restaurant and it had a NICE lavendar cosmo that we decided to try. BOY was it powerful! I only had 3 sips, but it knocked out the horrible headache I had at the time!! Mom was a little loopy too! And the lady that had taken the bus with us, had a shuttle set up to take us back to the hospital! Again, so sweet!! (Taking the bus at night just wasn't a good idea!) Once we got back to the hospital, we both konked out pretty quickly!!
Tuesday morning, I woke up bright and early again. Nerves were really hitting me. But I was at the day surger
y center at 7:30am. Got registered and then brought back to change into the hospital gown. Had my full history done and IV started through my PICC line. I didn't fight the catheter this time, as they didn't want to put it in. So I just went with the flow... ;) Thankfully my mom kept my spirits high so I wouldn't be too nervous. They came for me at 9:40am. That's when I started shaking. Dang those nerves! They took me to a waiting area, where I spoke with the anesthesiologist. Then they took me to another room where they got a CT scan of my head. I guess it helps their GPS system once they are in my head. Then they started wheeling me down to the OR and the anesthesiologist said he'd give me something to calm my nerves and the next thing I knew I was out of it. I don't even remember making it into the OR.
I don't remember being brought back to the hospital room. The rest of that day is kind of vague. I remember them telling me to pee in a bedpan, but I couldn't. I remember trying to get up to pee, but also couldn't. I felt like I had to go, but just could not. They did a bladder u/s and sure enough saw I had a lot in there. So after all that, in came the catheter. That helped. I also had these balloon type things on my calves. I guess it helps to keep from getting a clot in your legs, while you are laying. Problem is, every time I got comfortable, these things would do their thing and blow up to squeeze my legs some. It was annoying more than anything.
I felt horrible in general though. Excruciating headache pain, my eyes hurt, my nose hurt... Thankfully they kept me on a high dose of meds. Percocet seemed to upset my tummy, so I stopped that as soon as I figured it out. My first postop number was 50 - which I knew was bad. It did drop to the 40's, then 30's, then 20's, then down to 5, up to 7 and then back up to 30 over the next 3 days. I dealt with the painful aches and pains of going through cortisol withdraw, with nothing to show for it. I was beyond upset. They were taking blood at 6am/pm and 12am/pm and it was nervewracking watching the clock and waiting for results.
On top of that I got something called Diabetes Insipidus (aka DI). It's where you have an unending thirst and
it goes right through you. You crave anything to drink and it has to be ICE COLD! Thankfully due to the catheter I didn't have to worry much about the peeing part, but boy was I thirsty!!! Nice cold water or juice or anything that they would give me!! MMMmm...! But it had lessened over the next few days and I got the cath out before Friday. But by Friday when my numbers weren't going the way they'd hoped, they decided they didn't get all the tumor and I had to go back in for another surgery. :( I was bummed to say the least. When my 6am numbers on Friday jumped back up to 30, I knew they were going to take me back to surgery that morning.Friday, at 9:30am they came to get me and take me back to surgery. I was just bawling. I had told my kiddos I'd be home by Sunday and now it wouldn't be til next week. And the fact that Dr. M was sure he'd gotten it all the first time and wasn't sure he'd get much out this time was unnerving and worrisome. But back in I went. The staff was very sympathetic. I got to see the OR this time in all it's high tech glory and one of the docs in the room actually sat with me holding my hand til the anesthesia knocked me out. Again I don't remember much afterwards...
I vaguely remember being back in the room with the worst headache. I was still drugged up from the anesthesia and whatever pain meds they were giving me. They checked my eyes to make sure they didn't mess with my optic nerves, but boy was that painful to my headache. I passed back out and every so often I heard someone ask if I had to go to the bathroom. I kept saying now and could've cared less if I peed myself. (Which is so unlike me..hehe) It must have been late afternoon or evening when I heard one of the nurses run in saying my levels were 1.3 and they needed another blood draw. Then I was out again. I remember them coming back once an hr to get another draw. Saying it was 1.1 a few times and then finally dropping to 0.9. I could finally be supplemented with hydrocortisone. I finally came out of my stupor sometime Saturday morning. The leg balloon thingy woke me up. That dang thing.
They tried
to get me to pee in a bedpan, but like after the first surgery, I couldn't. So they dragged me up and put me on this portable potty they called "the comode." Thankfully I was able to go, but boy did I go and go and go!! Turns out I ended up getting DI again, but not as bad as the first time. I was able to get up and go to the bathroom this time thankfully. And it didn't dilute like it did the first time. I guess my numbers were close, but stayed within normal ranges - so it wasn't officially labeled DI. While I still felt sort of woozy and headachy, I did feel "better." I stayed through the weekend and got pain meds as needed. Dilauded was the best med - given through IV. Boy did that knock me out. I could use that now!In any c
ase, I was discharged on Monday, June 9th, 2008. They took out my PICC line then and I got all my prescription meds and mom and I were back to the Inn. The nurses there were so wonderful, they got me a wheelchair to have for the next 24 hrs to use getting from my room at the Inn to the cafeteria to eat. We took the Shuttle Express from the hospital to the aiport at 7pm Tuesday night. Our flight out was at 10pm. Yep a redeye flight. Boy did it suck. I may have gotten a half hr's worth of sleep. On top of stress dosing and worrying about every little symptom, I just could not relax.We arrived home at 6am EST. We got our limo driver, our bags and off we were to get home! Unfortunately, we had a VERY tired limo driver who was weaving all over the road and thankfully my mom was able to just talk to him the whole ride home. I was so tired, I slept a little on the drive home. We got home a little before 8am.
The kids had made signs that they posted outside the front door. And they were up and waiting for me. I had flowers and cards waiting...it was all so emotional. The kids and I prolly hugged for a good 5 minutes. Max even said he wanted to stay home from school to take care of me. I told him he couldn't cuz I needed my rest. But I promised I would be here when they got home. It was so good to be home. There's no place like home. . .
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