WHAT A MONTH....Better Yet..WHAT A YEAR!

WOW! May 6 was my last post. I set here wondering where the time went and then it all begins to flow back.

May 1 I get my HOPE tattoo. This was number 12

It is the Celtic knot for Hope. It's on my right forearm and I got it on my Pa's birthday. It hurt but not near as bad as the one I got on my birthday. In between these two my mom got the kewlest hummingbird. It looks like it is sucking nectar from the rose on her ankle. It's beautiful. I love the vibrant colors in it.

Birthday ink

This one I got on my birthday. The Hope knot was just about healed and didn't hurt so it was time. This is the biggest one I have and was by far the most painful.

That was about it for the fun though. Since my surgery in January I have had vision issues and headaches off and on. The reprogramming in April caused a significant amount of vision loss for about 3 weeks. It was kinda freaky. Watching my vision going down the toilet and knowing something is wrong but everyone is telling me it is adjusting to the reprogramming that was supposed to take two days tops. It ends up taking almost a month and never was quite right. I had an eye exam on my birthday that showed pressure on my optic nerve. Doc said I needed to contact my Neuro and have a visit with him. I contacted his nurse who said I should be in there first thing on the following Tuesday (26th).
Tuesday's tests consisted of a hellacious eye exam that sent me spinning. A shunt tap with dye insertion to make sure the shunt was working properly and a few CTs. Apparently I wasn't going to find out what was going on until Neuro called the next morning. Hind site...He KNEW what had happened. He called me at 7:45 Wednesday morning and told me the only option was to go explore what might be wrong. Ugh.....I don't have an option do I? So we leave at 5:45 in the AM on Friday (5/29) to go for "exploratory" surgery. Things went well in admitting. I had this WONDERFUL and beautiful woman who did nothing but keep me and John in stitches. I went to preop with the words of my wonderful Melissa echoing in my ear. "Tell them to give you whatever it takes to numb the IV area because those veins won't work with them". GOT IT! I told everyone I could find. Then she entered the room. Margaret aka nurse who knows EVERYTHING! Ugh. I told her that I needed something for my veins because they roll and, at the time, were NO where to be found. To which she said "NONE of my patients need that. I can get ANY vein the first stick". Let's just say I got a little ugly. I pointed my finger right square in her face and told her to look at my veins, which she refused to do at first and reluctantly did after I raised my voice, and see they are hiding. She rolled her eyes at me and gave in ONLY after I told her to either numb me or get the hell away from me AND one of the other Neuro's told her to go away so we could talk. He scanned my veins and realized that YES I do have a clue. I got 4 shots in my right hand and HE got THE ONLY vein available THE FIRST TIME. THAT man got a hug form me. Margaret ate some crow and left me alone after that. John came in and was very persistant about the NO Codine and Morphine thing. He's SUCH a good man. They gave me a sedative to relax and THIS TIME I remember going into the OR and getting on the table. I remember the gas. Now the fun begins.
My original catheter which was NOT replaced during January's surgery was blocked. drops of fluid were able to get through. Not good. The drain tube was kinked, AND the shunt was faulty. UGH! They could not remove the original catheter because my brain is VERY much attached to it. SO...they clip it off and drill a hole for the new one. OUCH!
The doc that attempted to put me off in January was the one to visit me in pre-op and recovery. He told me what they did and did NOT go speak with John OR my parents. They were PISSED! I spent 6 hours in recovery because they did not have the staff to cover the rooms for the guys coming out of recovery. I was SO sick. John came in and I couldn't look at him. My eyes were so sensitive to light I had to have a towel over them. He was AWESOME! He took turns with my parents. My mom was next. Right before she got there they were giving me ice chips. BAD! I threw up RIGHT as she walked in the room. NOT a good thing for a mom to see right after her kid has surgery. She started crying. My dad came in and did his thing. He's so funny. I know he was worried about me but that man would rather torment me than eat. When I FINALLY got in the room......the guy who brought me in smacked me in the head with his elbow. SERIOUSLY! Right smack in the middle of my head. I freaked. My parents had to leave. I believe my mother would have been thrown in jail had she stayed. I had no choice to to wake up at that point. It took me about an hour to fully come back from that one. Ice chips are NOT my friend at this point. Remember no Morphine or Codine so it's percocet time again. John tells the guy I need an antinausea with it. Dude keeps feeding me ice chips which my body is SO not ready for. They found out what I was telling them when it went all over the bed and all over the floor. WHAT A night. Things calmed down around midnight and I was able to FINALLY keep crackers and water down. I was SO hungry. It had been about 36 hours since my last meal. I SLEPT through the night. And then the fun began. The nurse that was on staff has no compassion. She came in once in a 5 hour period. The Neuro that came in at 6 AM to check on me asked me if I was supposed to go home. UMMM....YOU tell me if I CAN!!! So he said "if you're talking to me I guess you can". He checked about HALF of what he was supposed to and NEVER checked if I could get up and walk to the bathroom on my own. He ASSUMED I could. Of course I had to because my nurse never bothered to help me (like she is supposed to do after one has brain surgery). UGH! The weekend crew is the WORST! I WALKED out on my own. No offer of a wheelchair AT ALL. I didn't need one but I am ALWAYS asked. Word of advice...AVOID HAVING SURGERY ON THE WEEKEND IF YOU CAN! So We get out of hell and head straight to Starbucks. The BEST coffee ever. We go to my parent's house so we can see them and the kids. My kids wer scared to death. I looked like Sloth from Goonies. My face was SO swollen.

This pic does NOW show all of the swelling. Here it looks pretty good. But my ear was sticking straight out and perpendicular with my head.



You can see both incisions better in this pic. We call the new hole the little birdy. The original incision is bigger this time and that is a tiny oops at the end there.


I never could get it together and was always tired after January's surgery. I told Doc something was wrong but he wouldn't listen. So I came home on Saturday and went off all pain meds that night. I came home with Percocet and took one out of the bottle. I didn't do much this last week. And no...I didn't make soap two days after I got home. :( I've done nothing long enough that I had my freak out day on day 4 instead of day 3. Everything was fine until Wednesday when my incision began to ooze. I did was I was supposed to and contacted the nurse. I had to go in on Thursday and see the doc. My dad went with me this time. Doc was concerned and said he wanted me to stay a day or two for observation. It made no sense to go home only to return if my incision were to burst. SO..... After some emotional conversation with my dad and even more-so with Melissa we went to lunch. And, as Melissa promised, when I went into admitting a room was waiting for me. I had the same lady who admitted me last Friday and she SO made me laugh. SO much so it hurt. She was GREAT! She took me to my room and got me all cozy. Had my dad almost in tears with laughter. THE best medicine. The ORIGINAL nurse and I clashed. She called me a liar to my face about the order for NO IV or blood draw. It took me about 4 hours to convince them it was JUST OBSERVATION. Once we got past that I found out most of the ladies who were there in January were on then. I was SO excited. That made it great. THEN the guy who did my shunt tap in April came to "see his patient"....YES! If ANYONE should be doing anything to my brain it should be him. He was SO gentle. He promised, as long as it wasn't when he wasn't on duty, if anything had to be done HE would do it. YEAH ME! My dad just laughed. He did get concerned about the swelling on my right side but was comforted with the fact that it was this way from the beginning and it WAS getting better. Once the original nurse left and Dr Son came in to tell me NO NEEDLES OR BLOOD I was set. Dr shunt tap said no food after midnight just in case I needed a procedure. Made it with no procedures. Doc said that the drainage was from the clamped off catheter. It had leftover fluid that wanted to get out so it took the path of least resistance which was through the incision. I got a gnarly does of antibiotics to come home with. You know what bothers me the most about this whole deal? I have had REALLY SO little drama with my shunt in my life. I've NEVER been a poor me...why did this have to happen to me... kinda girl. It's just a part of who I am and I have learned to REALLY be OK with it. What bothers me is seeing all these kids who CAN'T do what they want to do and who CAN'T do for themselves. It breaks my heart and makes me so angry. Life can be SO unfair. I will willfully admit that I was in denial and scared before I had the surgery in January. I didn't want to deal with the fact that I was broken and needed fixing. I have two kids and I don't have time for this. HOWEVER...I'm not one for the poor me aspect of things. Each and every time I go into the Children's Hospital and look at all of those children who have NO clue how bad things REALLY are it humbles me even more than before. I see them laughing and struggling to get around. They don't know they are struggling because it is all they know. I realize just how different my life could have been had I NOT had that Neurosurgeon take on my case back in 1975 and do his best work in order to give me a chance. When people were telling my WAAAAY too young parent's to either say good-bye or be prepared to raise a vegetable this guy saw the fight in me and gave me the chance I needed to take on the world and show all those who had NO faith in me that I would NOT be a vegetable and I would have a "normal" life. I often wish I could have been a fly on the wall to watch that magnificent man do his magic on me. But then....Maybe not. Maybe I'm not supposed to know about that and just be thankful. Maybe I should go back to the Children's hospital in Florida and see if the guy who extended the drain tube when I was 7 is still around. Thank him for allowing me the thousands of chances to walk ON the cracks of a sidewalk or down the seam of a procelin tiled hallway or along the parking spot doo-dads with my kids and WIN because "I" did it the longest without falling off. I wish I could give that to all of those little angels I see each time I go to see my Neurosurgeon because I need to be adjusted, or have another shunt tap to see if there is pressure. Maybe I should just tell Melissa how much I love and respect her for making me feel like her MOST important patient. THAT is something I CAN do. This woman has been with me ALL year and has been my rock when I felt no one else knew how. Maybe I am like the 15 yr-old brain tumor patient she just lost and don't want my family to carry the fears I have along with their own. That's more like it. When I think that my family has had too much I can ALWAYS count on her to give it to me straight. And she does VERY WELL. She's the best. And what do we get out of all of these words on my screen.....Me setting here typing away instead of making soap because I just don't want to be given a hard time by someone who means well BUT should know better than to try and tell me I CAN'T do something. And it has also brought me to a head filled with ideas of my new ink. Several people have come to acknowledge me as "indestructible". I'm working on ink to represent that and it will go from my ankle and on to my foot. I've heard this is one of if not the most painful part of the body to have inked. I say BRING IT!
To my mommy...I love you. If you can put up with all of my bitching and STILL come back for more...you might need YOUR head examined.
To my daddy....T'anks for ALWAYS making me laugh...But if you don't stop whispering 6025 in my ear I am going to have to punch you. We need to go catch a movie and grab a coffee soon.
To John....T'anks for being my bestest doctor ever. I think I'll keep you.
To Camryn and Katie....I guess you should keep on pissing me off with your whining and cranky behavior. That way I know you are kewl with what's going on and you know I'll be fine.
To EVERYONE else....family is sacred. I would not have made it without all of you. Blood or not...you know who you are and I cherish you.
Now I have had enough of this sappy shit and I need some new ink. So if you don't mind. I need to get on with designing it. AND I might make some soap....just to make my mom needessly worry about me because she can. BWAHAHAHAHAHAHAHAHAHAHAHAHAHA!!