Showing posts with label baltimore. Show all posts
Showing posts with label baltimore. Show all posts

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.
Whew…..

Sigh…

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.

Sigh……….

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.

Wednesday, July 22, 2009

10 Surprising Reasons your Stressed

10 Surprising Reasons your Stressed


What only ten?

Come on I know I can name way more than that. Well anyway that was a recent title to an article in a magazine I was reading. I could not help laugh out loud at some of the top ten. Take for instance “you never have quiet time” well who does?

But anyway.

Stress. Whats the definition of that anyway?

“Stress is a biological term which refers to the consequences of the failure of a human or animal to respond appropriately to
emotional or physical threats to the organism, whether actual or imagined”

Hmmm, or in my terms- Your about to pop your every loving lid and officially loose it. Because you have so many things, people and whatever thrown your way that you don’t know whether to laugh, cry or go hide.

But that’s just my definition.

Stress is just a part of daily existence when you really think about it. There is no “easy” button and if there where how boring would that be?

Well to tell you the truth I think I am Marjory do for some boring right about now.

So I have not blogged in a while, so lets get caught up, shall we?

We shall!!

Boy o Boy…do I have a lot to share…

What else would you expect from me?

I like to say that “ I am incapable of doing anything small, If you can’t go big, go home”
This is extremely sarcastic as you will see.

Yes my Shunt that I have only had since March is obstructed. This means more surgery. More Brain surgery. I am real thrilled about that.

I will be going to Baltimore to Sinai Hospital to have Surgery. I will have my consultation on Wednesday July 29 with the Neurosurgeon and then have the actual surgery on Friday the 31st. They will first start by looking in the abdomen at the tubing there, and then move on to the head/brain where the valve and shunt are.
I will be spending two days in the hospital and then at least two more days in the Baltimore area before they will release me to head back home. From there I will recover at home before heading back to Baltimore for a post-op appointment. I should expect a 4 to 8 week recovery time, just as before.

Whew did you catch all that.

Wes is going to be able to be with me the whole time (thank you very much FMLA) and Mom and Dad will be coming up to Baltimore on Thursday and leaving on Sunday.

To say that I am not nervous, scared, worried would be a lie. But I can say I am comfortable. What, you say does that mean?

I am comfortable because I have to be. For my own sanity and those around me.
I have no choice but to be comfortable.

But is that all that is/has gone on? Oh heck no.

Now I feel at this point I can let you in on something because
#1 it’s all cleared up now
#2 It was not as bad as first though
#3 No one was ever in danger of contacting it from me as I made 1000% sure of that.

I noticed about a little over a month ago I have a few pimple raised like bumps on my inner arm. Right about the area where an I.V. had been. (Hmmm, I bet some of you can see where this is going) At first I did not think much about it but it just did not go away. Then, to my dismay it started to ooze a little (sorry if you gagged a little there) So I went to the Doctor, fearing the worst.
They looked at it and immediately said it’s probably a Staph infection and at worst it’s MRSA. Lovely, just lovely I think. So they took a wound culture and sent it off. Because it would take three days to get the results they went ahead and started treating it as if it was MRSA.
Lucky or Unlucky for me, depending on how you look at it….it was not MRSA but was a Staph infection.

I actually should not be surprised that I had one, being as how many times since January I have been in the hospital.

Let me just say that during this past month I have never washed my hands and arms as many times as I did then. I have also never gone through as many band aids as I did then. But yes, my fellow public was kept safe so that is what counts.


That must be all right? Wrong……Don’t you people know me better than that yet?

I loathe going to the Dentist. I would rather give birth seven times without an epidural than go to the Dentist. Because of that I avoid the Dentist like some people avoid a bill collector’s telephone call.

For the last several months I have noticed a slight..and I do mean just a teeny tiny slight pain in the left side of my mouth. Nothing to bad, and does not last to long. So why worry about it right?....wrong…..

It came to a head, screaming and raging its big ugly head Monday night. And I think it laughed as it watched me walk into the Dentist office.

The source of pain is a tooth that I had a root canal done on in 1998. After the Dentist does his examination and mops of the floor because of my panic and sweat , just kidding, he determines that the tooth has now cracked and cannot be saved. It will need to be extracted.

Say What!!!!!

For the love of Pete, can’t a girl get a break? Of course not when the girl we are talking about is me.

Extraction. what a really ugly, fowl word.

Basically they take fancy pliers and the jaws of life and twist the no good tooth right out of your gums.

Fun times kids, Fun times!!!!

That was today’s adventure….me versus the jaws of dental life.
The Jaws Won…

I was told I should probably expect some bruising on my face since when they tried to pull the tooth out it cracked in half and then they had to REALLY dig that sucker out.

Sigh…..

So here I sit with Vicodin , Ice Pack and a swollen jaw.

Oh yeah, and one heck of a headache. But that’s just everyday life for me know.

So after I have my Surgery in Baltimore (several weeks after actually) I will have to go back to the dentist to have an implant for that stupid tooth.

So here we are. All caught up. For now at least.

10 Surprising Reasons your Stressed…Give me a break….I know all 100 reasons why I am stressed