WHAT a MONTH!

HOLY cow! A LOT has gone on since I posted last. Sheesh! LAST time I posted I "assumed" I was finished with surgeries....WRONG! K my days are running together so PLEASE forgive me. Let's see...We were supposed to be in Orlando from 6/14 to 6/21. On 6/14 I woke up at 3 am to heavy leakage from the back of my neck. It was a water faucet at this point. I told myself I was going back to sleep because I thought I was dreaming. It didn't stop. I got up and went into the bathroom. As I set on the toilet trying to figure out exactly what was happening I realized I was in trouble and needed to wake John. I got him awake and told him what was happening. I was scared to death but surprisingly calm. We talked about it and I bawled (like I am right now) and as we lay down it became more and more clear that we aren't going to make the Orlando trip. I had forgotten that my mom was at the hospital with my pa and granny and called the house. I woke up my dad. I told him what was going on and where we were at that moment. The longer I lay there the more I realized I needed to head to the ER. I got hold of my mom and told her what was happening and told her I needed to head to Nashville NOW. As I freaked out a bit we were off. I got to the ER in Vandy and it didn't tale long at all to get in. Of course, by now, it's serious and getting much worse. They tried to get an IV and, realizing I had no veins tried to convince me that placing it in my neck was the only way. Not only NO....but Hell Fucking NO! They used the "freezy" spray and got the only vein they could find in the right arm and VERY close to my Hope tattoo. UGH! They told me what was going on and said I was scheduled for emergency surgery within a couple of hours. I called my mom and told them I wanted to see the girls before I go. I remember seeing the girls, my parents, and my great aunt but I don't remember if it was before or after surgery. I do know that my Camryn freaked out on my dad. She does not handle these things well. I don't remember much about the day or week. All I REALLY remember is waking up to a shocked John, nurse and Dr Tulipan. At some point...I was told I need a lumbar drain to help with the pressure. My dad begged and pleaded with the docs to NOT add the drain because my spine and brain stem were severed and it would not drain the way they wanted it to. Did they listen???? NO! Apparently I went into a light comatose state and none of the doctors could figure out why I would not wake up. Well....you dumb asses, my dad TOLD you what not to do. I had, supposedly, 3 sets f drain tubes placed in my head. Clogging and whatever else prevented them from working until the last round. My dad is there with John and John is afraid he is going to have to tell my parents what they don't want to hear. He KNOWS I don't want anything to keep me alive for the sake of keeping me breathing. If it will help....YES...if not....let me go. I pulled out of the "coma" and had all sorts of questions for which no one had an answer. UGH. I see I have a central line because they blew the only "GOOD" vein I had. I also had a feeding tube and was restrained. NICE. Apparently I was quite the hellion. I set around in the bed losing days and hours while I was on hellacious antibiotics to get rid of the infection. UGH. By the time I knew what day it was I completely missed Father's Day and didn't know my Mondays from Tuesdays. I did a lot of crying. I complained A LOT about the nurses and family members "visiting" ICU. WHY must everyone talk SO fricken loud while in the ICU???? Are we NOT supposed to be getting rest and bettering our health??? I bitched about family, nurses, doctors...you name it. I went to the head of the whole ICU about the noise AND one of the Neuros who had THE smartest mouth I have ever experienced. I mean, C'MON!!!!!!! Who the hell walks into a patient's room and starts talking to them WHILE THEY ARE SLEEPING and EXPECTS them to get it all!??!?!? Damn it to hell!!!!! This bastard pissed me off last time with his arrogance. Fuck it! I'll fix you!!! I went to the HEAD of the Neuro department this time. I was SO pissed. I went to the head of ICU with the noise and the head of Neuro about this punk. Let's just say attitudes changed after that. YEAH ME!!!
So my dad comes by on one of the days he is off work ( I don't remember which....I like it was Sunday) and he hits the floor. He didn't "black out" but it was pretty close. He said he could hear me talking to him but couldn't answer. UGH. Scared the shitake mushrooms out of me. He made it home and seemed to be OK....more on this in a minute.....
So the doc's come and check on me and do their thing waiting for me to have surgery. They draw spinal fluid from the drain and run tests to check for infection. Ugh. FINALLY...it's a go for surgery on July 2. I must have blacked out. I don't remember going to preop much. I don't remember the trip to the OR at all. I have remembered all of them except for 2 thus far. Surgery went very well. He was supposed to put all of the hardware on the left side to avoid infection. He could not get all of the catheter out but got most of it. See...I goofed on this part too. After it was all said and done he called a family meeting and told them he had placed everything back where it was originally using the leftover catheter part as part of the "base" for the new catheter. Whatever works. I woke up in recovery and don't remember a whole lot about it. I do know that I could not bring myself to get out of bed. My legs wouldn't work. Everyone wanted me to get up and walk but wouldn't understand that I couldn't. I slept most of the night. I tried to get up on Friday and it just wouldn't go. I made it to the chair but that is about it. Equilibrium and everything was off. I couldn't hold my head up let alone walk. Ugh! Then I had a weird heartbeat and they were concerned about the meds I was on. Erm....I was in ICU another night. I crashed again. I had been waking up anywhere from 1AM to 3 AM after going to sleep. Tonight I didn't. It was nice. I slept through the night and felt good about attempting to walk. THEN...BAM! They want me to go home with a picc line to administer IV antibiotics for TWO weeks. DAMMIT! I have to go through the drama of getting a picc line (which wasn't that bad...even for me) and have the central line removed OUCH!!!!!It went off without a hitch and I didn't have to kill the nurse. I walked a little around the room and the nurse brought me down to the first floor while John got the car. I CRIED because I was going home after THREE WEEKS of being in ICU! ARG! I didn't walk too well but I was so proud that I could because I couldn't the day before. It's been one week to the day since my last surgery and WHAT a week's it's been!!!!! The people with the infusions came by to change my dressing and talk about "stuff". UGH...more! She was really kewl. Walked both my mom and John through the IV process and they did very well. She changed the dressing and DAMN that hurt. She mentioned they would draw blood from the picc line once a week to check my body's reaction to the meds and whatnot. As long as no needles are involved....I'm kewl. Well this Tuesday she comes by and does her thing then needs to draw blood and the fucking thing won't draw. We tried for over 30 minutes to get it to draw. I bawled my eyes out. I told her she was not sticking me and if that meant removing the picc and everything to go for it. We got hold of the Neuro's nurse and it was all kewl. UGH!!!! TODAY was the day I was supposed to get a second shipment of meds. We needed them because of all the flushes we we through with the attempted blood draws and such. Steve ( GREAT GUY) who my mom had been dealing with about my meds kept calling and told us they would be here soon.
OK......SO....my mom called this morning and was all upset because of dad blacked out again last night. He hit the floor in the kitchen and jacked up his back. My mom was trying to talk to him and he was "just sleeping" and it was a mess. SO she calls this morning which got me all freaked out. My dad NEVER stays home from work unless it is a REALLY big deal. So when he went to the doc BEFORE he was told it was fluid in his ears and whatnot. They put him on allergy meds and he DID seem better. Obviously not. So my mom made an appointment for him to get checked out. Now his doc is telling him, IF he had a say, the heart doc would admit him asap and get it done. OBVIOUSLY he saw something on the test that was not kewl so....my dad has an appointment with the heart doc next week and my mom is all freaked out. But my dad is being as positive as he can be and knows he has no option but to get this worked on at some point. It would be AWESOME if they scheduled his surgery for
AFTER the 18th so I can be with them when he has the surgery. My mom is being SO strong right now but is really freaking out. SO...It's been a hectic month to say the least. I'm going to be fine. I feel good. I won't day great because I don't feel great. The meds make me VERY tired. My legs don't always want to work as they should. They are still weak and need
excercise. The picc line is driving me bonkers. The meds are inconvenient. BUT...I'm about half way through so it's OK. I'm really worried about my dad. I know, in my brain, that he will be OK with the surgery and some rest. My heart hurts. Watching everything that my parent's have been through this year is way too much. I wish I could fix it but know that I can't. For now...I'll keep on taking my meds like a "good" girl, get the rest everyone feels I need, I have had no desire to make soap yet and it has been WELL over a month since the last batch, I shouldn't say the desire isn't there....I've just got too much on my plate to think about it. Right now...my biggest thing is getting this picc line out. That's has me scared. I know my dad will be fine because....he's my dad. I know my mom will be fine. She is one of the strongest people I've ever met. SO...there you have it all. A whirlwind of a month and one HELL of a year. UGH.
Ooooopps....I forgot pictures. Yep...I'm bald. I had a pretty cute and newer Neuro shave my head which gave John a break. K..pictures....






This is a pic of the drain tube they had to use to drain the fluid from around my brain. Yummy...NOT! If they had done this in the beginning...it would have saved SO much time.




EKG ala Anhoki. Isn't it GREAT! Not. You can also see the feeding tube I sported for several days because I wouldn't eat.





The life savers are markers from the head CT and placement so the docs can do surgery. They "reused" my May's incisions so it's not that bad. No real pain to speak of and only 2 Percoset's used. :) SO glad to not be on pain meds. I do have a new abdomen incision though. Still...not too bad. I'll be glad to be me again though. :) Anyway...I think I'm all blogged out for now. Much love to one and all.