Sunday, August 30, 2009

It's looking funky....I know, I know

I know the blog looks a little strange right now.

For a while when you visit there is no telling what you will see. I am dangerous with my limited knowledge of templates and headers and layouts for blogs, so we shall see what happens.

So for now if you are bored or maybe looking for a good laugh keep checking back in to see what in the world I am up too!!!!!!!

Saturday, August 29, 2009

A Good Laugh

"What will you do, if it does not turn out how you expect?"
"I do not know. Nor shall I worry about it until it happens. I still have an action left to take; until I have exhausted it, I shall not despair." - Robin Hobb, Assassin's Quest

A Good Laugh

at my expense but don’t feel bad because I am laughing too!!!!

People are amazing creatures when you think about it. No, I don’t mean in a scientific, spiritual, or mechanical sense, I mean in an everyday, common sense, practical, heartfelt sense.

It seems that some people, to put it lightly and nicer than I want, have not an ounce of sense or tact about them.

Why do I tell you this? Well let me tell you about my experience checking in at my local hospital to get a CT done. (Now, let me remind you that I have a lot of hair shaven off but with the help of styling and bobby pins you really can’t notice.) Any who…,after I checked into the main desk I went to sit down and Wes went to the restroom.

As I had just sat down I hear someone say “ what have *(*(* to (*&)*)” yea, I did not understand it either. Well for starters I did not think she was talking to me so I said “excuse me, are you asking me a question?” “Yes”, she replies and says “Lady what have you done to your head” SAY WHAT!!!! I cannot believe a total stranger has just asked me this ridiculous question. So after I had picked my jaw off the ground I calmly told her that I had a shunt. That seemed to pacify her. I really walked away stunned not knowing whether to laugh or cry. On one hand how insensitive on the other hand it was an honest question….yea your right it was a insensitive. Lets face it people I was in a hospital waiting room not the deli department at Walmart.

But come on really, why would you ask that? That I put up there with the “Are you pregnant question. You never asked that question until you are 115% positive then you wait some more.

After talking to Wes about it I figured out what I should have said:
“Well it’s the darndest thing. Those lawn mower blades just kept coming
after I fell off.

Come on you know I would never say it but heck it's funny stuff.

Overall no harm no foul right…Wes and I have had a good chuckle over that.

But that brings me to the “But You Don’t Look Sick” and “Everyday Doctors”

Now, just to be fair most people mean well. They think they are helping, bless their hearts I am not trying to be offensive but hey like I say you either laugh or cry and I choose to laugh!!

Intracranial Hypertension is an invisible disease. What is an invisible disease- a chronic illness or disease that is not visually apparent. Basically someone has a illness or disease but does not look it. They do not have a wheelchair or cain, they look energetic an may walk just fine and seem normal. That’s what an invisible disease is.

Frustration would be my definition but that is neither here nor there.

The world is full of advice and suggestion and just do this. It seems like everyone has an MD in front of there name when you get sick…LOL. A great quote I see posted on some forums I visit is

“My disabling chronic illness is more real than your imaginary medical expertise”

A little harsh, yes but it is just meant to be funny. Remember laugh people, laugh!!!!!

People always like to comment about my horrible head pain. Notice I said head pain and not headache; I am giving that word up. This is a common conversation I will have with someone.

“Oh, you have a headache? I have some Advil." First of all, Advil won't get ridof the type of headache/head pain I have, not even close. Second of all, it won't even touch the type of pain I experience from the spinal fluid in my brain squishing my brain against my head. I have narcotics and muscle relaxers for the pain I have. Your Advil is like a tic tac to me.”

Hate to say it but its true. The whole family of Advil, Tylenol, and Excederin are nothing but candy corn to me these days…

People are a curious creature that is for sure.

Back to Reality

Back to Reality

Ahhh, yes inhale deeply…well not that deep, these days you just never know what is in the air!!!

I woke up this morning to the best thing; two beautiful girls bounding towards me and tackling me onto the bed in a fit of kisses and hugs. We sat in the bed for quite a while and just talked and laughed and carried on like only mothers and daughters can do.

Reality of being home is wonderful.

The dirty clothes piled up in the laundry room are wonderful.
Seeing that my house is in desperate need of cleaning is wonderful.
Hearing the girls bicker is wonderful\
Soccer season if in full force

Well maybe that’s a messed up kind of list but it is just great to be back to the reality of everyday life. What is and always will be most important is my two girls being happy and that at the end of a long day I can say a prayer with them and tuck them into bed. It is absolutely amazing how two little souls can have such a great impact on you.

Yes my friend’s reality is a great thing, even if it involves dirty socks!!

Thursday, August 27, 2009

Where we left offf

Ahh yes, where were we. That’s right they had come to take me to the O.R. So much for one hours notice. But looking back that was probably a good thing, it gave me way less time to worry and think.

Sitting in the O.R holding pen (well that’s what I like to call it) I was surprisingly calm. Well then again I had four wonderful people around me to help me stay that way, Mom, Dad, Trey and Wes. I still could not get over that Trey had surprised me and driven all the way to Baltimore. What an awesome thing to do. He is just an awesome kind of guy and brother. I talked briefly with Dr. D and she gave me her calming words that everything was going to be okay, I was going to be okay and that it was time to get the infected shunt out before it had time to do more damage. Next up was the Anesthesiologist, he was a riot and I remembered that I’d had him from my last surgery. The only reason that I remember him was the way he referred to the medication that actually puts you to sleep. He called it “Jackson juice”. Yep, I kid you not this is what he said. That with some other hilarious things made him hard not to forget. This is actually a welcomed thing when you are about to go into surgery and are nervous as a tick as it is. Before he leaves the O.R. pen he says he will come back about ten minutes before it’s time to go to the O.R. to give me some relaxation medication. This way I won’t be so anxious and won’t even remember going into the O.R. Remember this little tid bit….it’s important in a minute.

So we wait what seems like an eternity but is not and then it is time for me to tell everyone bye and give hugs and kisses. I get a shinny silver surgical hat to wear and off we roll. As we are rolling pat O.R. rooms, I am thinking “Wow, I have never seen this part of the surgical side” we finally get to O.R. room 8 and in we go. Wow, it’s bright in there and it looks like there’s a party going on! The radios blasting a Beatles song and for a moment I think I have died, why else would I be witness to this strange site?! Then it dawn on me, the Anesthesiologist never gave me the “happy” shot. LOL He comes barreling through and saying something to the effect that they took me back too soon. To that a surgical tech in the room says “well that’s fine you just owe her a double dose of the happy shot” Over all no harm done. So I lay on the bed and here come this huge mask of blue. It looms over me and I know I am about to surrender. The Tech tells me to take deep breathes and count backwards from 100. I think I made it to 98.

Since coming out of surgery I won’t lie and say that everything has just been wonderful. Let’s face it; I had a piece of equipment in my head that even though it may have been barely working it was doing something. My head fills like a helium balloon expanding. This may be due to the Intracranial Pressure building back up. This almost leaves me at times feeling incapacitated and shaking in pain. Since the surgery my Doctors have been trying to pin point a medicine that can help control the pain (nothing is going to rid me of it). The main problem they are having is that what works comes in I.V. form and I cannot do that at home.

Another issue that has brought is ugly head to the surface is nausea. It is almost constant and sometimes it follows through. For the sake of all, I will not go into anymore detail

My eyes have never given me a lot of problem unlike many patients with Intracranial Hypertension, and I am thankful for that, but since the shunt has been removed my eyes have decided to play games. I have two black dots or “floaters” in my right eye and have experienced several episodes of tunneling and double vision. While in the hospital I had an Ophthalmologist examine me twice. He did not see any swelling (the main concern in someone with Intracranial Hypertension) but did say that my eyes have become lazy.

The infection in my shunt they cultured and grew to determine what type of antibiotics I would need. Lucky me, this has sent me home with a PICC line and I.V. antibiotics for two weeks.

So did you fasten your seat belt for all of that?

Now what’s the game plan?

I go back in 10 days to have the staples removed.
One week after stopping the I.V. antibiotics I will have a Spinal Tap done to make sure the infection has cleared.
Then I will meet with Dr. D. and Dr. W to discuss options.

On a really good and fabulous note: One way to relieve to symptoms of a headache is to get a great big hug from a nine and seven year old.

Tuesday, August 25, 2009

Fasten your Seatbelts Kids

Fasten your Seatbelts Kids

How can it only have been four days since I took the time to blog. How can only four days have gone by when so much has happened? I just don’t slow down, not even for four days to happen.

We spent Wednesday night in our new “home away from home” Sinai Hospital. I got a little bored/antsy and took some pictures of the room. I know, how weird is that? My room is huge (compared to most hospital rooms) besides there just being a bed and side table for me there is a complete sitting area with couch and chair. In the stand up closet there are four folding chairs and even with these out, there would still be room for more. One really great thing, (and very convenient for the nurses I would think) is there is a nurse work station in each room. Each patient’s room has a station for the nurse equipped with a computer and basic supplies. Instead of having to trudge back to the nurse’s desk to check something, they can just check it right in your room.

To start with Thursday morning I had a CT scan. You will start to see a theme with me and CT’s so don’t worry it’s not a typo. Then the dreaded Spinal Tap/Lumbar Puncture. I will not go into to many details, because frankly I don’t want to relive that even in my head again. My opening pressure from the LP was 31. Whoooooooo…..Not Good….Really Not good. If you remember most “normal” peoples opening pressure is between 10 and 18. Not 31.

This is when I knew, this is when all the thoughts and concerns I had were confirmed.
I am sure some people thought I was insane or panicking for being back in Baltimore so soon. I am sure the thoughts crossed everyone’s mind when a little over a week ago I started complaining about my neck being sore, or just feeling crappy like I had the flu. At home I would randomly run a low grade fever of 99 or 100, discussions were had about that not being a “real fever”. I am sure everyone thought I just need to get a hold of my self, after all it had not been that long since I had the revision surgery. But with an opening pressure of 31 I knew that I was validated with my concerns. If there is one thing I have learned it is to trust your body. I know one heck of a lot more than anyone else about it.

So now that we have blood drawn and spinal fluid drawn it is a wait and see game. We wait and see if any infection or bacteria grow within the sample. This could take 3-4 days. By this point my neck has become my worst enemy..LOL…seriously. I never knew that my neck could possibly hurt as much as it did but WOW. It is to the point that I have very little range of motion and it just throbs. Friday morning brings another CT scan, okay strange. The Doctors now want to send me over to the Keager Eye Center for a full eye exam. This is connected right beside Sinai Hospital and I and my transportation friend hit the halls. Know let me remind you that I just had a lumbar puncture yesterday…that is a very important point right now. My transportation friend drops me off (I am in a wheelchair and stay sitting there) in the waiting room, signs me in, hands over my medical chart and I sit. I sit, and sit some more. Now let me just say that my Nurse had some into my room right before I left and told me the Eye Doctor wanted to se me know!! So I figured I would go in wait maybe 10-15 minutes and then be seen. As I sit in my wheel chair I have found a clock on the wall, you know just to glance at every now and then. But as I sit in the wheelchair I start to get hot, and that old familiar feeling of slight pain runs across my forehead. I also feel sharp pain in my back. Hmmmm, lets see I have just had a lumbar puncture less than a day ago and here I am trying to sit up in a chair…Guess what folks? It really does not work that way. I look at the clock 30 minutes have passed. I sit there and honestly try to tell myself I can do this, but my body is saying otherwise. I look at the clock and 45 minuets have passed, I can’t so this anymore. I am in a cold sweet, my head is pounding so bad that I am unable to keep one eye open anymore, my back is starting to arch and worst of all I am extremely nauseas. Thankfully this is when a nurse sees me and tells reception that I need to get back to my room. There is some flash of argument that I will be seen really soon, but thankfully the nurse will hear none of this. By the time I got back to my room, I was a mess. In complete tears already, seeing Mom, Dad and Wes sent me into hysterics. I can’t remember the last time I was in that degree of pain. I know all this is due to the lumbar puncture but still geesh… I will save you all the details of the rest of this day because #1- they are not pleasant and #2- the Charge Nurse ended up having to be called into this mess and really strong narcotics were needed to make this nightmare stop.
To say the least, the rest of the day…..I have not clue what happened. I woke up and it was Saturday.

Saturday came and I was off for another CT, this time with contrast. What is going on with all these CT’s, I am not sure, but intend to find out. We met with Dr. D and she let us know that the cultures from the blood and from the LP were not growing anything yet, which was somewhat surprising. To be on the safe side though she wanted to get a CSF fluid sample closer to the brain, and that would be in the shunt reservoir. She felt like she needed to get a clean sample. She cleaned to top of my head with bedodine and after draping she used a long needle and pulled the fluid out of the reservoir.

The rest of the day was pretty mindless and we all thought that nothing would happen (surgically) for three or four days. After all, it would take that long for the new fluid sample to show any infection Wes was scheduled for a three trip so he went home to get ready for that and Mom and Dad planed for Dad to fly home on Sunday night.

Sunday came and I was off to another CT. What gives, what’s up with all the head CT’s? Turns out they are using these to also watch for infection by changes in the brain….DUH.
So the day is mostly going by pretty boring? Mom had just gotten the confirmation on Dad’s flight home when my room door opens and Dr. D’s PA comes in. She bypass’s everyone and looks at me and says “When and what was the last time you ate”. Well, the last time at ate was at 9:30 and I had a blueberry muffin and coffee. I guess the obvious question of “Why” is on my face. The sample culture from my shunt reservoir has started to grow, it is an infection. This means that my shunt is infected and is way to close to my brain and this sucker has to come out fast. She tells me she has to check in with Dr. D. and let me know. I stand there with a look of shock on my face for about a minute and thinking wow this is happening really quick.

First things first. I have to call Wes and let him know. When I call him he is ten minutes away from the airport and fifteen minutes from checking in. I gave him a brief run down of what was going on and wham he was off the phone with me to make calls. About that time Dr. D’s PA came back in to let us know that surgery would be sometime after 2 o’clock on Monday. Nothing to eat or drink after midnight. What a long night that was.

Monday I tried to stay calm, key word try. So as I am sitting there cruising on the internet and out of the corner of my eye I see someone walk into my room. When I look up guess who I see? Trey, my big brother…can you believe he drove all the way from North Carolina just to see me! Know let me re-phrase that. I can believe he would do something like that because that is just the type of person/brother he is. But still, he was there. He was there to cheer me on. It almost made me cry. I had to get out of bed and give him a huge hug!!!!

So we wait, and wait and wait. 12 o’clock turns into 1 o’clock and 2 o’clock turns the corner into three. Now my nurse has told me that they will give me an hour or so “heads up” before they come get me. HA HA…yea right. Mom and I are talking about something and there is a knock on the door. Two ladies dresses in OR scrubs are there and say they are ready to take me to surgery!! So much for that hours heads up, LOL.

I will continue the rest of this and tell you about the surgery in the next blog.

Thursday, August 20, 2009

In the Hospital

In the Hospital

Life is like a Country Music Song I have determined. Right now mine would be…
“If your going through Hell”

Well that’s not the name of the song, I think but that about sums up what’s going on right about now.

We got to Baltimore around 1:00 today. We have definitely found the trick to the traffic pattern. The only problems we ran into were a little outside of D.C. and that was mostly because it was a monsoon of rain. We headed over to Dr. D’s office and sure enough they knew I was coming in and said they would work me in asap. We did have a bit of a wait but that was not a big deal.

She came in and right away said she was glad to see me and that I had made it here without incident. She took one look at me and felt my neck and said we need to put you in the hospital.

Based on the neck stiffness, low grade fever, headaches, overall achenes, and redness along the shunt path signs were pointing to a shunt infection. But without putting me in the hospital and running numerous test, labs and procedures she has no way of knowing.

One interesting and I think funny (if you can find any of this funny) part of our
Conversation with her is that she said she has not had a patient with a shunt infection in over four years and she has never seen on a patient the redness along the shunt path. To this my reply to her was, and I kid you not I did say this was “well you’ve never met me before”. Let’s face it people I am like the walking black cloud these days!

Back to the appointment….

What she is afraid has happened is that the shunt has become infected. The infection that she is worried about is Meningitis. If the test results do come back as Meningitis then, well it’s not going to be an easy rest of the month for me. Basically if it is positive they will within 24 hours take out my current shunt, surgically. Then I will need to have time to heal and let the antibiotics clear the infection in my body, this would be approximately 10 days. Once the infection has cleared then I would go back into surgery for placement of a new shunt. For all of that I would have to remain in the hospital. With meningitis there is no playing around.

Wes asked her if the shunt is not infected what else could be going on? Her answer was that she just did not know. See, this is my I love Dr. D. She is honest. She does not try to be super Doctor know it all. Sometimes the best answer is “I don’t know” and “We will have to go from there” In my opinion this is one of the many attributes that make her such an amazing Doctor.

So she left her office to make a few calls and to get us a room at Sinai. I don’t think Wes and I said much in the time that she left, heck what was there to say at this point?

She came back in and told us that a room was not ready yet but to leave our cell phone number and they would call us as soon as one was available.

On a good note, if there is one is that the bleeding in my brain and from the ventricle has completely cleared up and dissipated. So, in theory I should have a working shunt. Hmmmmm. Also, while in the hospital Dr. Williams my Neurologist, whom I adore, will be coming to see me.

So we left her office to get something to eat since we had not eaten since we left early that morning. We also had to make a zillion phone calls to let everyone at home know what was going on. Well, let me rephrase that, Wes has a zillion calls to make. LOL

Side note- If you ever see a restaurant called Noodle & Co I highly recommend it, very yummy!

After eating we headed to the hospital and I told all natural sunlight adios!
Since being admitted it has been a whirlwind of activity.

First off Dr. D’s PA came in and did an extensive evaluation. She was very nice btw. Then for all the blood work. I was expecting normal blood work. Ummmm, I was wrong. You know those nice little tubes/vials at the Doctors office that they usually put your blood into? Well, those were no where to be seen in my room. In the place of that were collection bottles. Yes people, collection bottles. They were the size of the mini glass coke bottles and upon seeing them Wes left the room and I thought my eyes were going to bug out of my head. But I survived just fine.

I will have a spinal tap Thursday morning. They will test the spinal fluid for infection. I hate, I despise spinal taps. I know that I will inevitably get a spinal headache and that my back is going to be in flaming pain. I already have a killer headache so this I guess will just be adding insult to injury.

They have not started any I.V. antibiotics yet, and with good reason. They want the blood work and spinal fluid to show them a true/unaltered specimen of what is going on. If they had started me on antibiotics then the spinal tap would not show them a clear picture of what the infection really is. But, as soon as the tap is done I will be staring I.V. antibiotics. I already have an I.V. line in place ready to go. The antibiotics they will be giving me are the same they would give me if they knew I did have meningitis. They do not want to “wait and see” my health cannot afford a wait and see approach.

That sums is all up.


I cannot believe this is happening.

When does this nightmare end? This is a really bad ride and I want off.

I am trying to stay positive. Believe me, I am. But frankly it’s getting a little tough. Everything and anything that can go wrong, does go wrong. To make matters worse this time I am hundreds of miles away from my family. I am miles away from two precious little faces that cannot begin to understand why Mommy is not there. I missed there first soccer practice tonight. Tomorrow I am going to miss their Open House at school. I am not going to be there for the first time ever for them to meet their teachers! I am missing so much. I am missing them with every beat of my heart.

It’s not fair…..this whole damm thing is so not fair!!!!!!
I want my life back. I don’t think that is too much to ask.
But here I sit in a hospital, yet again, waiting to see if I am going to have not one but two surgeries. My head and neck feel like vice grips are on them and my body aches from head to toe. What does it feel like to feel good? I don’t know anymore, and I can’t remember anymore.


Just when you think you are over the hill something comes and slams you back down again. I know that I have two choices in the matter. I either sit at the bottom of the hill and cry and scream or pick myself back up and trudge up the hill again.
I choose to trudge up the hill. It may take me a while and I may kick, scream and cry the whole way up but I will get to the top. One day…..I am going to make it to the top of the hill and not fall back down. One day I am going to conquer this hill.

Wednesday, August 19, 2009

Not feeling well, Headed back to Baltimore

Not feeling well, Headed back to Baltimore.

The last couple of days have not been good ones.

My headaches at times have seemed to ramp up but something else is going on.

I noticed very suddenly a sharp pain in my neck (the side where the shunt is) and then excruciating pain set in and has not let up.

My neck has become very stiff, tender, and sore. It is swollen in places and feels liked knots have developed within the shunt tubing. To turn my head to the right is impossible. I am not able to raise my arms without tears coming to my eyes. The reservoir in my head where the shunt is feels “different” I cannot explain it very well but it does not seem as large and protruding.

I am also running a low grade fever. This is not a good thing. Being that I just had brain surgery less than a month ago this is very concerning even if it is low grade.

I have redness that almost looks like a rash down my neck, over the collarbone and down my chest. This is not good at all. This is a sign of an infection.

I have been told on numerous occasions that any fever and redness along the shunt track is sign of infection and needs to be taken care of ASAP.

After being in contact with my Neurosurgeon, she prescribed a heavy duty muscle relaxer, which did nothing, and ordered some test. The first series of test were X-rays of the abdomen, cervical and skull. In these series of test they were looking to see if any of the “hardware” had dislodged or moved. It has not. The second set of test was a CT scan. I do not know the results of these yet.

After much phone tag and debate, Dr. D feels it is best if I come in to her office to let her examine me, because lets face it you can’t examine someone over the phone. What concerns her is the fever, swelling and redness as these are all classic signs of a shunt infection. In my conversation with her she did mention possible hospitalization for I.V. therapy but we will cross that bridge when we get there.

I thought the headaches were bad, but couple those with this neck pain and WOW! It has begun to hurt when I walk and go up and down a step as that seems to jostle everything. Now, trying to lay down in a bed….well lets just say that thank God Wes is here.

So that is the latest. Wes and I will leave tomorrow at 6:00 a.m. We have found that this time avoids the traffic congestion in Richmond, Fredericksburg, and D.C. I am not looking forward to the car ride because every bump is going to be so painful.

Just when I think I have reached my threshold of pain, it gets upped again.

I am hoping and praying that the shunt is not infected and that a hospitalization or surgery is not going to be required.

Hope is sometimes all we have left, but it is something very grand to hold onto.

Piper turns 7!!!!!

Piper turns 7!!!

Wow!!! Where does the time go?

She cannot be seven can she? I demand a recount! Haha

It seems like yesterday Miss Piper Collins could hardly walk and now she’s a little soccer playin, fashion diva.

We had a great birthday party for her on Sunday and I could not have pulled it off without a lot of help from my wonderful mother.

The theme of Piper’s party was “Cooking”

When all her guest arrived they each received an apron and used special paint markers to decorate it. Then they each decorated a placemat for themselves using foam pieces. It was great to see the different artistic abilities of each child.

After that it was time to cook! Pizza time! Each party girl made their own personal pizza and I have to say the girls made some mighty nice looking pizzas. For the adults that were there, we had hot dogs with all the works, potato salad, and chips.

Now for the really fun part. Each guest received their own 9” cake plain cake. On the table before them were three containers of white icing and dozens of bottles of sprinkles. And if that was not enough, there were cake decorating bags filled with different colors (red, green, purple, pink, blue, yellow) of icing and a variety of cake tips. With the only instruction of how to hold the cake decorating bags I told them to have at it. LOL!!!!!

These girls had a blast decorating their cakes. There are some budding artist out there people, so watch out. Each cake was decorated completely different and they were all sooo beautiful. I think the girls really enjoyed this. I mean, how many times as a kid were you handed a cake and a ton of icing and told to have it and not told how it had to look? LOL! After they had finished there edible creations I put them in a cake box for them to take home and show off and enjoy with there families.

So now after all this cake decorating it was time to eat cake!!! My mom made Piper’s cake and it was too cute!! It was in the shape of an apron and had a real bowl and mixing spoon set on it. To outline the apron and to show the apron stings she used pull apart twizlers. Written on the apron cake in icing was “Happy Birthday Piper. #1 Chef “

Yummy, Yummy…I will say here that the icing mom and I made ourselves for the kid’s individual cakes and Pipers cake and it was sooooo good. Heck, it should be when it called for 3 sticks of butter and 2 sticks of Crisco for each batch. Eekk!!!! LOL!!

So with cake you must have ice cream, right? Of course. So I had set up and ice cream sundae making station complete with marshmallows, nuts, cherries, M&M’s, Oreo’s ect… for them to make their final item.

After presents it was time for everyone to leave.

Whewwww what an exhausting party. I was spent and so was my head. But it was worth it when Piper came up to me and told me that this was the best birthday ever and that the girls thought this was the coolest birthday party they had ever been too.

See, that’s the thing. When you are a Mom you will do anything for your children, anything. To me, it does not matter how bad I feel just as long as I continue to see my children happy and smiling. I

Seven….can you believe she is seven?

Next thing you know she’s going to be sixteen and giving me a royal heart attack…so maybe seven is not so bad.

Thursday, August 13, 2009

Questions I will try to answer

So I had a lot of people ask some questions in light of my recent blog entries, so I thought I might try to answer them. Try being the key word..LOL

Q: Where are the Syd and Piper (my children) when you travel back and forth to Baltimore?

A: They are with their Dad, my first husband. I try to schedule everything so that they are with him when I have appointment so not to disrupt their lives.

Q: How long does it take to get to Baltimore and why don't you just fly since you can for free?

A: It takes around six to seven hours to drive it depending on traffic. I don't fly into Baltimore becuase #1, I have to fly standby and usually I have a set time I need to be somewher and can't afford not to get on a flight. #2, Once getting to Baltimore I would then need to rent a car and that is just another added expense we just don't need right now.

Q: Why doesn't Wes alway's go with you to all your appointments?

A: Wow! I can't belive somebody asked this, but I guess it is a fair question. Yes, he does have FMLA but when he uses it he does not get paid. I am not working right now so basically he sorta needs to. LOL!!! So he goes to the big stuff and things when he is already scheduled off.

Q: Are you going to cut your hair again or shave it all off?

A: Good question!! I seriously thought about shaving it all of, well for about 5 seconds. I am not about to pull a Brittany Spears. This time its not as bad as I thought it would be. I am still able to cover it up pretty good and with the help of bobby pins it stays in place pretty nicely.

Q: With the blood in the ventricle wouldn't that be Hydrocephalus?

A: Another great question! That was what my Doctors feared was happening when they saw the CT scan after surgery. But my ventricles have stayed very small, in fact the ventricle where my shunt is has collapsed. Which for my shunt to work is not good but for fear of hydrocephalus it rules it out. For those who don't know, in Hydrocephalus the ventricles expand and get larger which is a problem. Dr. Dorai has commented several times how tiny my ventricles are which is very common in patients with Intracranial Hypertension.

Q: Why are you traveling to a Doctor so far away?

A: Not to be rude butif you read back over my past blog entries you will see why. It's not been easy to find a Doctor that can effectacly treat this disease.

Q: Since this new shunt is blocked wouldn't this surgery be a failure, and aren't you mad at these Doctors?

A: Well...yes and no. I don't consider this latest surgery a failure becuase who would have thought that I would have a brain bleed dirctly during/after surgery that would immediatly clog and block up the shunt? She has done tons of these surgeries and I am only the seconed patient she has ever had this happen to. What are the odds of that? Wish I had that kind of luck in Vegas! No, I am not mad with her. I think she is an outstanding Doctor. She has not given up on me and continues to have a plan.

So there you go, some random questions answered.

Today, so far, has been a pretty good head day pain wise. I hope it stays that way. Wes made some awesome homemade pizza last night and tonight he is making spagetti with his homemade suace. I love when he cooks!!!

Tomorrow I am going to make Piper's birthday cake with a lot of help from Mom. Hopefully her birthday party will come off without a hitch! Now if we could just fiqure out what to get her.

Wednesday, August 12, 2009

Baltimore ^$^#*&* ummmm Well Ya Know

Well maybe that's not a very nice way to open things up?

But that about sums up how I feel at the moment.

Mom and I left for Baltimore yesterday and I think we both had our doubts that we would even make it to I-95. I woke up with an excruciating headache that morning. It was to the point of being in a sweat and sick to my stomach. I took my Oxycontin and Percocet..nothing. I had spent the previous night at Mom and Dad's but we had to go to my house for me to pack. By the time we got to my house I really thought my head was going to explode. I knew it was time to bring out the big guns. Yep, Torodal injections. I never thought I would welcome drawing up a medicine into a needle and injecting it into my upper thigh but I gladly welcomed it this day. About ten minutes after the injection and a Phenegran pill I felt so much better. I slept all the way to Baltimore.

We met with Dr. Dorai this morning and I knew in my heart of all hearts it was not going to be a great appointment but still I guess it just stings to finally hear it directly from her. I knew things were wrong because my head is still hurting as bad as ever.

She looked over my CT scans and the blood in the ventricle has not gotten any worse and is starting to dissipate. Now for where the appointment goes downhill fast.

She does not want a shunt patency test done now (this is the test where die is inserted into the shunt to see if it flows through that will show if the shunt is blocked) because it will only tell her what she already knows. The shunt is not working. Yes, you read that right. Not working. The blood in the ventricle has blocked up the shunt. How did that happen? Well...When they took the first shunt out it was attached to tissue in the brain and the removal caused bleeding. This was not seen until after surgery was over on a CT scan.

We asked does this happen a lot? She said No. I am only the second person she has ever had this happen to. Oh course I am. That's the kind of luck I have.

So what do we do from here?

Basically we wait. Crazy I know. The blood should dissipate. Should being the key word. Once it dissipates we will do a shunt patency test to she if the shunt is working. If it is not we will do surgery again to replace the surgery. There is a change that the blood in the shunt has clotted up in there and even after the blood in the ventricle dissipates the shunt will not work.

However, if my vision starts to be effected before the blood clears she will have to go ahead and place a shunt in my left ventricle. (this is not the desired location for a shunt) She will not compromise my vision.

So what do I do about the pain I am in for now. This is a very legitimate question we asked her. She very plainly stated that I do whatever I have to do to stay comfortable. Meaning, pain medication wise.

I am to have another CT scan in one month and mail her the scan. Then I will see Dr. Doari and Dr. Williams and we will make a game plan from there.

Whewwww.. That's a lot to take in. I am not sure I have taken it all in yet.

I still cannot believe that the surgery did not work. I really thought I would walk our of that hospital pain free and feeling like my old self again. It was not to be.

We did ask her about an LP shunt. This is a shunt that is put into your back, if you remember this is the shunt that I came very, very close to getting. She said that she has never put one of this in anyone because there is no way to control the valve and overdraing is a big problem with these and low pressure headaches. Boy am I glad I did not get one of these because I have had low pressure headaches before and the only thing that makes them better is to lay flat. That is definitely not a way to live.

Overall I am just numb. That is the only way I know how to describe it. This disease has been right in my face for over seven months and I am still do not feel like I have a handle on it yet. I do feel like I have finally found the best set of doctors for this. Dr. Zeena Dorai and Dr. Michael Williams, they are wonderful!!!

I cry, I yell, I am angry, I am sad, I am frustrated, I am disappointed.

But I have hope. I will never loose hope. You can never loose hope.

Sunday, August 9, 2009

Fred Flintstone

Fred Flintstone

Welcome to Bedrock!!!

Well my ankles are welcoming you that is. They are more like cankles at this point. They are swollen and hideous. It’s a good thing it is summer and I can wear flip flops because there is no way these puppies would fit into a pair of shoes.

I woke up on Thursday and right away noticed how swollen both of my ankles and legs were. Of course I was panicked by this. After a couple of phone calls, off to my PCP it was. Considering that I had just had major surgery and the swelling was severe he was concerned that I may have developed a blood clot in my legs. The only thing that made him think it may not be that, was the fact that both ankles and legs were involved. He sent me off to the hospital to have an ultrasound done on both legs to rule this out. While I was going to be there he went ahead and ordered the CT head scan and X-ray of the abdomen. (one less trip to radiology works for me)

The results can back pretty quickly from the ultrasound…no blood clot…that’s good! Now what is causing all the swelling? After looking at all the meds I was taking we think we may have found the culprit, a muscle relaxer. One of its rare side effects (like less than 1%) is swelling. So no more of that for me…easy enough right? Wrong!!
BTW- The CT of the head showed that the bleed in the head was still there but it had not become any larger.

You would think that simply stopping that medicine would solve the problem, yeah me too. Well the problem is still here and it is now causing my hands to swell!! My poor feet almost look square they are so swollen. As of this evening my calves are swollen and very sore. None of this can be good. I may not hold a medical degree but I do know that something is not right. It goes without saying that tomorrow I will be headed to the Doctor…again

For everything else well…..I had a horrible headache most of today, my side is killing me, and the whooshing has come back in my ears sporadically. Wes goes into work tomorrow for a three day trip and the girls are with there Dad until next Sunday.

Sounds really gloomy but on a positive note…the sun rose this morning and so did I.

Tuesday, August 4, 2009

Not for the faint at Heart

So everyone always wants to know where they cut at on my head.

They want to know how big the scar is.

They want to see it.

So I have decided to post a picture of it.

Now I am giving you fair warning that this is not a pretty picture.

I am telling you right now that it may make you squeamish, or sick to your stomach. Its not bloody or gory but it just looks, well...frankensteinish.

I am telling you, no, I am warning you that if you don't want to see it then DO NOT scroll down.

You have been fair warned so don't get mad and be "I can't believe she posted something like that"

TA DA......Wes has dubbed this the question mark incision

So there you have it my friends.

Thank goodness my hair will eventually grow and cover up that scar.

So now you will understand when you see me why I will be sporting a scarf. From my original surgery I lost 14 inches of hair but my hairstylist was able to "do" something and give me a new hair style. This time, there is just not much hair left to do anything with. Oh will grow and on the plus side I get to go shopping for a lot of scarfs!!

Falls into place. Falls into peices

Home sweet Embassy Suites Home!!!

Considering it has been some form of residence for my parents, Wes, or me for almost a week now.

I was spent Friday and Saturday night in the hospital and was discharged late afternoon on Sunday. Before being discharged Dr. Williams (my Neurologist)came by with the second set of CT scans. (if you remember the previous CT scan showed blood in the ventricles of the brain...not a good thing) The second set/series taken Sunday morning showed that the blood was dissipating and not getting any larger. So that is a good thing!!! On a sour note he did say there is a possibility that the blood may have clotted up/blocked the new shunt OMG!!!! NO WAY!!!! In the same breathe he also said that is appears that the bleed may be a little above the shunt. Aghh....only me people, only me...

So to be honest this has had me in a not so lovely mood.

As far as how I am feeling? Well do you want a sugar cookie answer or the truth?

Ha know I am going to give you the truth.

I feel horrible. But hey, what do you expect? I just had brain surgery.

My symptoms and pain are still here....they left for a little while but then they came back....why?

I awoke from surgery on Friday and did not have a headache. I spent all day Saturday without a headache. Now, don't get me wrong my head hurt but it was a sore, hit your head on something kind of hurt. It was wonderful not to have the gorilla jumping, jackhammer headache that has been a constant with me since January.

Well that all went to shit pretty quick.

It started out slow but them came raging back quick as lightning. My old familiar friend headache. Yep, he showed back up on Sunday and has not left.

This really worries me. One sign/symptom of a shunt malfunction or blockage is a return of old symptoms. That combined with the blood in the ventricles does not help any.

Instead of wallowing in despair I took Wes's advice and called Dr. Dorai (my Neurosurgeon) to ask her about this and a few other questions.

#1- What was her opinion of the blood found in the ventricle?
She said that this was not something they expected to happen during surgery (only me right) when they took out the old shunt from the ventricle this caused trauma and that is why there was a bleed. She was however pleased with the results of the second CT scan that showed the bleed was not getting larger. To continue to monitor this, I am to have another CT scan done at home before my follow up visit with her on the 12th.

#2- I am having horrible pain still in my upper abdomen, like before just on the other side.
She really did not have a good answer for this one and to be honest its the only thing she has never really had a straight forward solution/answer for. She feels that it is the tube loose in the abdomen trying to find a place to "rest". Hmmm not what I wanted to hear but I will take the "lets give it time" answer for now.

#3 and most important- The headaches were gone for 2 1/2 days, now they are back.

This is why I love Dr. Dorai. She did not mince words, did not sugar coat it, did not brush it off. Basically, the blood in the ventricles may have caused the shunt to become blocked, I may need another revision Before jumping into surgical options she wants to see what the ventricles look like on the CT scan. I would also need to have another shunt patency test (this is the test I had where they inject dye into the shunt and watch to see if there is any flow) Mostly she is hoping the headache goes away.
But she is realistic. She is not going to leave me high and dry. She has a plan.

So...... The conversation with Dr. Dorai was not exactly what I wanted to hear, but in my mind I knew that was what she was going to say. Once these horrible headaches came back after being gone for over two days, I knew something was not right.

Since Sunday night Wes and I have been staying at the hotel. Poor guy, I know he is going bananas! Thank goodness we have a two room suite so that I can sleep in one room and he can have the TV roaring in the other. Like always he has been wonderful through all of this. I am sure at times I drive him crazy but when I get upset about this whole situation he is right there to hold my hand or give me a big hug and that lets me know it will be ok.

Today we called my Neurologist Dr. Williams to see what his thoughts on things were and if he wanted to see me before we left Baltimore. He wants to see me next week when I come back for my post-op appointment with Dr.Dorai. He is very concerned about the returning headaches and most likely will try to schedule some testing for next Wednesday also. He will be in contact with Dr. Dorai in the next few days so they can get a "game plan" together. I should hear from him by the end of this week with more information.

I have an amazing team of Doctors, no doubt, all of that has finally fallen into place.

The problem now, is that I keep falling into pieces.

Saturday, August 1, 2009

All New Parts for Me!!!

All New Parts for me!!!

Surgery went well yesterday. Thank God.

The only snafu I ran into was my wedding ring and engagement ring. I started Thursday night trying to get those suckers off. I tried soap, lotion, ice water, Vaseline….you name it. By the time I got to registration and the pre-op holding area my knuckle was four times its normal size. EEKKK!

But have not fear as Mom was near. She new of this trick with dental floss or string to get them off. Problem was, no one could seem to find those items. We and the are discussing this as an Orthopedic Doctor happens to hear this conversation and says “Oh yeah, I can do that with my mask string”

LOL..I swear there was an audience of at least nine nurses and four Doctors watching here get those blasted rings off my finger. The way she did this was taking the mask string and threading it under the ring, wrapping one end and then wrapping the other end over and over the skin. All the while doing this you pull and twist on both ends of the string. This action forces the swollen skin down while also raking the ring across your finger and finally off. Now, it hurt like hell, but I did not want them to have to cut my beautiful rings off.

After all that excitement it was time for surgery. Off I went.

The next thing I know…I am in recovery. Naturally the first thing I did was reach for the top of my head (uhmmm we will discuss the horrid hair later) Then I see Wes. Yeah!!!

He tells me what they a nutshell here we go.

The general surgeon was able to do the distal/abdominal part of the surgery laproscoptically. He did find a mess of scar tissue and adhesions but more importantly he found that the tube was blocked, major blocked. So all the tubing was replaced by new and they were able to find somewhere to place the tube without having to go into the chest cavity.

Dr. Dorai’s part of the surgery was the actual shunt in my head/brain. What she found was that I had a major blockage. There was very little if anything coming out of that shunt. So she replaced the whole shunt system. From the catheter, valves shunt that goes into the ventricle to the tubing that runs from the brain, down my neck and under my collar bone.

Basically it was out with the old (well it was not really old, it was just placed in March) and in with the new.

I don’t remember a lot about being in recovery and that’s probably a good thing.

The only concerning thing going on right now is that the CT scan that I had at 2:30 am, yes you read that right 2:30 am, showed some bleeding in the ventricle where the shunt is placed. Dr. Dorai’s PA is the one who informed us about this. The other Neurosurgeon, that is on call this weekend) will be coming by to check on me and discuss this later today. I asked the PA what they would do about the bleeding, and all she would really say is that she had to talk the other Doctor but normally if the bleed is not to large they will just let it heal on there own.

Pain, Discomfort, Sore, Ache, Bruised, Relived, Anxious….those are just some of the words I would use to describe how I feel right about now. Basically I feel like a Tractor ran over my neck and head. So for now I am going to let them pump me with IV pain relief and close my eyes.