And then there is home

I have yet to figure out how to put pics where I want them in the blog so for now - we must deal with it this way. This picture is right after my first shower, about 48 hours after surgery. Wow - that felt amazing!!

Dave says I have things out or order. I kinda knew that would happen so I am resorting to bribing him to tell his version. We shall see if he does it or not.

So, after I visit my new friend, they come in and give me the amazing news that I get to go home! YAY!!! The ride home was - well - OUCH! We live about 1 1/2 hours away from U of M and despite being in a roomy van and having pillows, it HURT!

I have two great danes, my adult is a rescue, 140 pounds of pure joy named Apollo. My puppy Duke is 7 months old and a beast at about 120 pounds. To say they are mama's boys is an understatement. They follow me everywhere. I was more than a tad afraid how they would react when I walked in. We blocked them out of the living room with chairs and I gave them love over the chairs in a safe fashion. My son Eric, who will get his own post one day he has been so amazing through all this, fed them and then I got to say hello. I missed my babies and was so happy to get my leans in.

The 4 youngest kids were at their Dad's and I plopped down, well ok more like crawled into bed. I had bought new pillows before surgery, including a memory foam one. Laying on my side is the only way my head feel remotely OK and this pillow is a life saver. I made a bunch of calls and that was my evening. With the couch in the living room and Mama in bed - Dave, the Danes and kitties were all very content to just lay with me.

It is now Monday night and I am caught up to Friday night - I'm getting there :-)

And it's done

This puffy picture of me laying on my side is just sad. My eyes are OPEN believe it or not. This was taken sometime during the day on Friday, before we left for the regular room. The picture with the matted mess of hair showing my scar was not long after surgery. Not sure what the gunk was but it was caked in my hair! Gross!! The first pic is with Staci - you can see how swollen I sill am, when my youngest daughter (7) saw it she asked where Mama was :-(

I am hoping to get Dave to guest blog his version of the story since I am missing a bunch of information. I can't even tell you the actual first thing I remember. I know I was in ICU, I know I was in the worst pain of my life and that my eyes were swollen shut. I had this granny turban looking bandage on my head and that made the swollen eye thing worse. It was tight and pushed my forehead down into my eyes, you know the ones that can't see as it is from being so swollen. I was told that my face was swollen from being on my belly for so long during surgery. The fluid decided to pool into my face. All I know is I couldn't even open my eyes and my left eye hurt so bad! It stung, light made it worse and was constantly tearing up. Of course every resident at U of M had to look at, with their silly little light pens. GRRR!! They said I had a corneal abrasion and ordered meds for 2 PM, this was early in the morning - why the wait is beyond me.

The pain in my head was not something that can easily be described. It was like I had two levels of pain. The outside pain I knew and understood - my poor neck muscles being stretched and manipulated while the Doc did his thing, the other pain - well, it made me wish I was dead honestly. It felt like glass was being ground into my brain and no matter how many meds they gave me, it wouldn't leave. The hours past by like minutes as I waited for my next dose of useless meds. Poor Dave tried to help but there was nothing he could do. This continued throughout the first night. My nurse Steve was so sweet. Not the brightest bulb on the planet but sweet as can be.

Morning came and I was starting to get pissed. Yes I get that I should be hurting after brain surgery but this was becoming too much. I cried, I snapped, I was mean to the nurse and my poor husband. He left to make calls and get food (or so he said, I don't think he actually ever ate) and it was like a light switched. The glass grinding pain was gone. Maybe it had something to do with the fact that the Docs were giving me Vicodin for pain. SERIOUSLY? I take stronger meds than that daily for my back and somehow they thought Vicodin would help after they cut my head open. Well, my meds were with me and honestly - I took them. When you live with chronic pain for 3 plus years, you know what meds work and which ones don't. And this lady knew the Vicodin wasn't gonna cut it. They brought me my breakfast, a tiny omelet that was child sized but it was the first food I had eaten in over 24 hours.

The nurse that replaced Steve was not as sweet. We had words more than a few times which I honestly think helped the next step of my recovery. He came in and told me it was time for a regular room. I was ready to leave ICU! The catheter came out and off I went to a new room, after I went to the bathroom of course :-)

Within minutes of getting there, I had the arterial line and the IV in my foot out - YAY! They left the IV in my left hand in but the bag was gone. We decided to go get somewhat real food from the cafeteria since I had not picked my lunch and who knows what was coming. The room itself was super nice. Somehow I got a private room, my own bathroom and even a shower. A nice chair for Dave to sleep in and all. I still wanted to feel as normal as possible.

So, I put my PJ's I brought with me on, after I washed up as best as I could in the bathroom and my trusty hoodie and off we went. We explored a tad and had lunch. It felt good to feel human but I paid for it with pain when I got back.

Dr. Sullivan finally made his rounds, up until this point it was his residents. He told me everything went well and he has never seen anyone need more drugs to knock them out like me. Finally some validation that what I have been saying all along is true, normal meds don't work on me. Good to know for future reference. He also said I could go home the next day.

A few hours later another resident came and I half jokingly said can I go home now since I'm eating, walking and on only oral meds and she said she would ask but didn't see why not. While waiting for my answer, this amazing new friend I "met" on facebook called and asked if she could come see me. She found me through a Chiari facebook page and we have spoke online the last few weeks. It doesn't get any better than someone who understands what you are going through! Staci came bearing gifts and even tried to brush my nappy hair. She is a blessing I thank God for!

More on the return home part later, I get tired very easy.

Pre-op

This is me, shortly before they took me in for surgery. Gotta love the happy meds they gave me :-) The funny looking thing on my forehead is the monitor they used to tell how out I was during the actual surgery.

We found our way to the admitting spot and after a very short wait, we were taken back and the prep began. Got the elegant gown on, IV in and then a guy comes over to put the arterial line in to check my blood pressure every hour during surgery and when he told me he was from anesthesia, I started crying. I couldn't help it. One of my biggest fears had been anesthesia. Having had two surgeries and a procedure where the anesthesia wasn't adequate, I was afraid. One surgery I was paralyzed but heard and felt everything, not pressure but the actual surgery itself. The other surgery, I woke up in the middle and pulled the breathing tube out, dislocated my jaw and had to be restrained. Needless to say, the concept of the anesthesia not working fully freaked me out.

The guy was so sweet. He asked why I was crying, with genuine concern in his face. I told him my story and he went to get me some meds to calm me down and brought the anesthesiologist with him. I re-told her my story and again, I see true concern. I swear the guy even had tears. They understood and had actual sympathy for what I had been through and assured me they would do everything in their power to make sure that didn't happen again.

They had a plan and even said they would wait until I was under anesthesia to put the arterial line in. They would use a BIS monitor to make sure I was actually "out" and I now sing the praises of this invention.

The meds calmed me down and they gave me more as they were taking me away. Next thing I know, I am in ICU - I didn't even remember being in the OR or the recovery unit. This was a huge blessing to me.

Despite the tears I saw in Dave that morning, he was once again my rock during pre-op. No tears or fear was visible in his face, even as they took me. He is the most amazing husband anyone could ask for.

Officially a zipperhead!

Once again, I am bad at blogging :-( I am done with surgery and even home. Since I am so far behind - this will take a few posts to get caught up on things.

The day before the surgery was better than I thought. I had moments of freaking out but I kept busy and that helped. we got the kids hair cuts, cleaned up and moved the bed downstairs. I won't be limited on stairs but figured this would be an easier way for me to re-coop. I must say, the living room looks silly with a bed in it but it is rather convenient. I think the next house will have to have the master bedroom on the main floor!

Morning of surgery I woke up too early, nerves were there but not as bad I had imagined. I puttered around until it was time to get Dave up. The ride down to U Of M was good, as long as we didn't discuss the actual surgery. Once I saw the actual hospital, I kinda freaked. My heart went in my gutt and I was so afraid. I wanted to go home. I wanted to be anywhere but facing brain surgery. Dave was my rock. He did cry that morning when we both let our guard down and felt the fear but other than that he was my trooper.

More later, my time spent upright is still limited to about 1/2 hour tops before I have to rest.

I am so bad at blogging!

I have a good excuse though - actually a few :-) As if prepping for brain surgery isn't enough to deal with, we ended up at Children's hospital with my 11 year old son last week. I had my pre-op appointment not too far from my Mom's so I decided to take the kids down there to see her. Who knows how long it will be again before I can make the 2 hour drive. While down there, Josh ended up doubled over in pain and a hospital trip became on our agenda. The original hospital didn't have a pediatric surgeon so they sent us to Children's hospital, via ambulance. After a long, sleepless night (screaming babies!) they told me his appendix needed to come out.

He was discharged late that night, which meant a long drive back to my Mom's to get my other kids and my Danes, then back home. In the two days we were down there, I got MAYBE 3 hours sleep total. I was done when we got home! The next day I re-cooped some of my sleep though with lots of napping and the slept like a baby last night, for like 12 hours with only one wake up. WHEW!

He is doing very well and hoping to go to school tomorrow. He hasn't had any pain meds in two days. YAY!

Now we are down to the final countdown. Surgery is this Thursday and I am not ready and ready at the same time. I want this done but am so afraid of the recovery :-( Sometimes information can be a blessing but sometimes, well, it can scare the crap out of you! I have read so many horror stories. Not much I can do but pray at this point.

My biggest wish is honestly that had let me do the back surgery first. My lower pain causes me more issues than the Chiari but the Chiari has me in danger of loosing the function of my right hand so it must be done first. Slim chance the Chiari surgery will help the lower back, a girl can wish though right? I just want my life back.....

In the still of the night....

In the still of the night I hear the wolf howl honey, sniffing around your door. In the still of the night I hear my beat heavy.....

Can you tell I am a child of the 80's? Whitesnake was not talking about fear in this song at all but when I woke up from my nightmare, that was what I heard. I know fear is the work of the devil, maybe that is why I heard that song. The wolf that is the devil tries to steal whatever he can and tonight, he stole my peace.

I am scared. My heart is beating fast and I am thinking I don't want this surgery. I have to, I know this. I just don't want the pain. Maybe I am just being a wimp but I don't want it :-(

During the day I handle it well. I keep busy, I make smart ass jokes and all is well. Everyone keeps telling me how strong I am but they don't see me in the still of the night. They don't see the nightmares, the fear and the trembling. I still have 10 days before surgery and I just hope I can make it through.

U of M it is!

Went to see Dr. Sullivan at U of M and REALLY liked him. Surgery is set for February 11th. and pre-op is next Wednesday. I will be in ICU the first night, regular room the next and if they can control pain, I will go home on Saturday. I am a fighter and have every intention of fighting my way home. Of course I say that now, before I have an 8 inch incision in my head/neck and have bone missing from my head and neck along with a ton of muscles being cut in my neck. Two weeks from tomorrow - YIKES! I can do this right?

Ironic part is when I called Cleveland Doc to tell them I have chosen a different Doctor, the lady I spoke with cut me off mid sentence and was very rude. Confirmation maybe, I dunno but I am glad I didn't stick with that Doctor. I have a peace. That doesn't mean I don't have fears but I am comfortable with my decision.