Hallucinations

Since these are obviously not reality, I cannot give a time order to you. I will just list them one by one. Put them occurring at any day/time that you chose. You’re guess is as good as mine!

** NONE of the events are real! Although you might guess that! **

1. Sleeping at “night” in the hospital: I am sleeping in my bed or trying to. I wake up a lot. My parents, Zach, Elyse, and Dan are all sleeping in the room together. I know I’m in the hospital, but this is more like a hotel. There is a room where Dan and I are sleeping then a room behind ours where my parents, Zach, and Elyse are sleeping on mattresses on the floor. One of the mattreses has a burgundy bottom sheet. During the night I try to amuse myself by looking around the room. One of the lights in the room has cover on it with the logo of the Kansas City Chiefs. I decide that the owner of the hospital must own the Chiefs and that is why their logo is on the lamp covers.
2. During the nights at the hospital, Dan is sleeping in a chair next to me. I know he is uncomfortable. I notice that there is a crib-like portable bed next to me. Why doesn’t Dan just sleep in that? I try to motion to him to get in and lay down, but I just can’t manage to communicate what is going on.
3. At night, the bugs come out. Seriously. They do. There were ants all over my bed. Flying bugs in the air, and they only came out at night. The flying bugs mostly stay in swarms in the corners of the room, but every once in a while the come fly around my head. I am not afraid enough to move in my bed, but I decide right then and there that when I walk out of this hospital, I am writing a nasty letter tell them of this health hazard. Really, they ought to clean these beds!

To be continued…

Feeding Tube

At this time, I am not aware of how much or little my body is functioning. The reality is it is more on the little than much… I could not move the left side of my body: leg, arm, face, fingers, toes, etc. I cannot feel touch, and I don’t remember if I am responding to pain at this time yet. I’ll get to that portion later. Just keep in mind through this post that I don’t realize what I can/cannot do.

The next event I remember is getting the feeding tube put in. It is so weird to think about because I think I was awake, eyes open, but it is a hazy memory. Hazy in how things looked and hazy in remembering the actual events.

My side of the story: I am sitting up in my bed. My mom is with me. We are in a clinic of sorts. There are a lot of people milling around, and I think they are all getting medical care. I am in a big open room.

The doctor comes to me and says we are putting a feeding tube in so that the nourishment can jump start the healing process.

I’m a little confused as I think I have just woken up from surgery. This would mean I ate about 24 hours ago. Why don’t they just let me eat?

The doctor asks my mom if she will get woozy watching this. She says no (my mom is a trooper!). I think she is holding my hand. The doctor tells me to relax and he begins putting the tube in.

Have you ever had a feeding tube put in through your nose? Not fun. I couldn’t relax. I tried to breath and swallow when they told me to, but it was so uncomfortable and painful at times. Somehow there was water in the beginning of the tube, and water going in your nose just isn’t right. I mean, you’re supposed to plug your nose when you jump in the water right? It hurts when water goes in your nose. It’s just not natural.

It took several attempts, but the crazy doc finally got it in.

Whew! Relax again, more sleep…

Real Story: This all took place in my room in ICU. I don't think anyone was there but my mom and the doc. This is just the beginning of the hallucinations!

Sometime later, I woke up to a portable x-ray machine in my room. They needed to make sure the feeding tube was in my stomach and not my lungs or something.

It is in the right spot. Whew, again! I did not want to go through that again!

More sleep…

Sometime in my drowsy state, I hear someone say that the formula for the tubes comes at 4 o’clock. My mind starts to race. How do I eat? How will I swallow? What if I choke? I clearly did not understand how this feeding tube business worked!

Dan is in my room. I somehow think it is near 4 o’clock. I can’t talk yet. I am VERY concerned about this whole feeding routine. I decide I must figure out how to eat. So I start to spell words out in sign language. One tiny problem, I don’t remember all the letters and Dan doesn’t know any of them. Good combination.

Dan figures out that I’m trying to tell him something, and he goes for the nurse. All the nurses are trained to know basic sign language. They can’t figure out what I’m trying to say either. Of course, I don’t try to sign “eat” or something basic like that. I try to spell out the whole sentence, “how do I eat?” Only problem is I can’t figure out “h.” Oh boy…

The nurses bring in some signs that have the alphabet on one side and basic functions on the other (roll over, nurse, light, turn on TV, etc.). So Dan goes through one by one to try to figure out what I need.

They are frustrated, and I am frustrated. I decide to give up and ask them to roll me over. Back to sleep…

Note: I’m positive now that the feeding tube was working the whole time I was trying to figure out how to eat. What a loon!

Waking up from a Coma

I did not know prior to the surgery that I would be put into a coma. It’s kind of weird waking up from it.

First memory:

Chunk! (think big level used to turn on stage lights)

BRIGHT red light is directly over my head shining in my eyes. (Hindsight tells me my eyes were closed hence the red. I think I was still in my ICU room.)

Dr. F.: Emily, do you want to get this tube out of your mouth?

I have a tube in my mouth? Huh, well, he sounds like getting it out is a good thing… I nod yes.

Dr. F.: Ok, you going to feel a little pull while we get the tape off. There’s some on your nose and your cheeks.

“Little pull” my hiney, that medical tape is the most lethal weapon they have at the hospital. I think all the captured terrorists would start talking really quick if they just put some medical tape on a hairy part of their body and RIP it off. Yep, that is the solution to world peace.

Dr. F.: Ok, Emily, when I count to three I need you to give me a big cough. Ok?

Cough? Why should I cough? I nod anyway.

Dr. F.: One, two, three!

A two-by-four is ripped deep out of my throat, so deep I wonder how I didn’t know it was there. I start coughing and gagging. So to make it worse, Dr. F sticks the suction tube down my throat. I do mean down my throat. Like, it was in my stomach. Seriously. I’m gagging and coughing. It was terrible.

Dr. F.: That was a great cough, Emily!

Gee thanks

Nurse: Don’t worry honey, he’s not going to put his sword down your throat again. You can rest now.

Sleep beautiful sleep….

AVM Surgery

I obviously don’t recall any of the information from this day. :) This is what Dan and my family has told me.

The surgery started bright and early on Thursday, December 3. The surgeon needed a fresh team as this surgery was predicted to last anywhere from 6 to 24 hours.

First the prep work, shave the incision area, make the incision, peal back the skin, open the skull, and we’re ready to begin the surgery (too much detail??). I don’t recall the time when they actually were ready to begin to take it out,  but it took a long time to prepare for that and an even longer time to take out the AVM. It was a very delicate procedure.

The AVM was even bigger than the surgeon had imagined. It was a big fella. The AVM was the size of an apricot but cone shaped like a banana pepper. The most difficult part was extracting the tip from deep down in the brain.

Dan and my parents waited at the hospital waiting room. Luke and Lacey held a prayer vigil at the church during the ENTIRE surgery. What a blessing! I can’t even tell you what a comfort and joy it is to think that so many people were lifting me up in prayer that day. It brings tears to my eyes right now to think of the prayer warriors at L&L’s church that didn’t even know me, but yet, they committed part of their day to bringing me before the ultimate Healer.

Can you imagine sitting in the waiting room? I can’t. I’m a worrier by nature. My mom says I get it from my dad. Here is another part where I see God’s mighty hand at work. I was not worried. I did get anxious before surgery, but the night in between and after (and the weeks leading up to surgery), God had me wrapped in peace.

Back to the surgery, my family got updates every few hours. Oh the pins and needles they must have been sitting on during that time.

Around midnight, Dr. Rob, the physician’s assistant, is going home. Dr. F. is still finishing up, but he can handle the rest. Sometime after 1pm, I’m all put bsack together and returned to my room in the ICU. To assist in the healing process, I was put into a medically induced coma.

Dan and my parents (I think L&L came too after the vigil) are allowed to see me in my room. My room is now a low stimulation room. They say you can hear what people say to you while you’re in a coma. I don’t know. I don’t remember. Those drugs are good you know?

Some 18 or 19 hours later, surgery is over. Now, the healing begins.

Opinions Needed

We have an open house on Saturday, and I am attempting to "stage" some rooms better. I am no interior designer by ANY means, so let me know what you think. Be honest, you won't hurt my feelings. :)

Dining Room Shelves Before:

Dining Room Shelves After:

Better? Eh?

Sorry about the picture quality. We need a new camera.

The reason for the change is to free up the big white frames for our bedroom. I want to do as much staging as possible with the things we already have.

Bedroom soon to come...

Embolization – Wednesday, December 2

The anesthesia used for the embolization and surgery has an amnesic quality to it. So even though I was “awake” going into both procedures, I don’t remember too much. The embolization procedure took place in the afternoon, and I couldn’t tell you anything about that morning.

As far as I know, the procedure went well. I think it took a little longer than they imagined, but they have to put the glue in REALLY slow. For those that don’t know, the purpose of this procedure is to block off all the arteries leading to the AVM to make the surgery that removes the AVM easier. For some people with small AVM, this is the treatment. The risk of surgery is too great for small AVMs. So they just cut off the blood flow, and the patient goes on with his/her life.  In my case, the doctor thought I had a medium to large sized AVM so it needed the whole nine yards.

Here is what I remember the night between the embolization and surgery:

1. Waking up. Waving my right arm to signal to Dan to roll me over. “Where do you want to face?” Point with my arm.  Rolling and stuffing of pillows. Lather, rinse, repeat. This happened over and over and over. Dan says I asked to be turned over every 10-15 minutes all through the night. I just couldn’t get comfortable.

2. While in the hospital, they put a monitor that measures your oxygen on your finger. It has a glowing red light on it. I waved this to get Dan’s attention throughout the night.

3. Notice, I couldn’t turn myself over. This might seem odd to you, but for some reason, it did not seem odd to me. Dan says that the embolization had already ceased the functioning on my left side. We don’t know exactly what caused it, but it was one or a combination of the following: swelling from the procedure, medication, or brain damage.

It is now Thursday morning, I don’t remember anything except rolling in my bed to the elevator talking to the nurse about Christmas shopping.

Surgery proceedings began early, maybe 7am or so. That’s all I know for a few days.

The Days Leading Up to Surgery

After you’ve been in the hospital for any amount of time, you loose track of the date, how many days you’ve been there, what happened on a given day, etc. It’s like time stands still.

The visitors I remember before surgery are my co-worker Whitney, her husband, Candice, and Jordan. I think Whitney came to visit a day or two before the embolization. She is such a sweetheart. I love her to death. We had a nice visit in my itty-bitty (but private!) regular room.

Speaking of rooms, I was moved back to a regular room to await surgery. No worries, nothing happens this time! Except bad roommates, Holy Cow!

Roommate #1 is very, very ill. Whatever she has causes her to vomit and call out for her family all the time. Remember, I am on bed rest, no blowing my nose, pushing out BM’s, etc (don’t you love all the details!). Throwing up is definitely out of the question. Dan finds the nurse, explains the situation and requests a room change. The nurse claims Roommate #1 isn’t contagious. I’m glad you think so, but you aren’t sleeping 4 feet away from her!.

We get a room change that night. Thank you, Lord!

We are in our new room for several hours before Roommate #2 arrives. She is a hysterically-cranky, sweet old lady. Her family is with her through the evening then leaves. We over hear the nurses doing their neuro-checks and cognitive tests with her. We can barely contain the laughter on the other side of the curtain. I think she answered every question in the most sarcastic manner possible.

Nurse: What day is today?

Roommate #2: How should I know?

Nurse: Why did you come here today?

Roommate #2: Some old fart brought me here.

I can’t remember all the things she said. The term “old fart” was used over and over in reference to anyone and everyone. Hysterical.

I don’t know how long we were in that room, but we were eventually brought to a private room once one opened. It was so tiny (as mentioned above), but SO nice to not have some stranger snoring next to you or waking you up in the middle of the night because she doesn’t know where she is. Poor lady.

The night before the embolization Candice and Jordan came to visit. What was so great about their visit, besides the company, was Candice did my nails. So fun! She gave me a wonderful manicure. My nails were a fantastic purple when she finished. I kept it on the entire time I was in the hospital and rehab. It really lifted my spirits when I looked at it.

That night I was progressively more and more anxious. I’d like to think I kept a pretty cool exterior, but I don’t know. Family, feel free to call me out. I remember someone says that when they were in the hospital, they got some meds for anxiety to help calm them down before the procedure. Eventually, I buzzed my nurse to ask for the same thing. I’m not sure what I got, but it definitely did not calm me down. I think the meds are either psychological or meant to prevent anxiety not treat it once you are anxious.

**I don’t remember this part, but Dan says I asked for it over and over again before the embolization. I was getting a little freaked out, ya know?**

10k River Bank Run

We made it! Check out our race results here.

It was a grueling race. The weather stunk, and I was not the most prepared for this race. I'm so excited to finish though. Dan and Erin were by my side every step of the way. I started to lose it somewhere in the 4th mile as we struggled up a hill. I didn't think I could make it. I somehow pulled it together, and we all finished strong. Thanks to Dan's encouragement!

I Run

I'm taking a short break from the AVM story today. It will resume tomorrow. This post is for today, May 8, 2010.

Today is six months and five days after my AVM surgery. Six months and five days after an 18-1/2 hour surgery to remove a tangled mass of arteries from my brain. Six months and two days after I started waking up from a coma. Here's where I have come from:

No movement in the left side of my body.
I cannot sit or stand on my own.
I cannot eat or swallow.
Such extreme weakness from the bed rest that my "good" side is quite feeble.



I have so much to be thankful for. Many people who have the surgery that I did do not recover as full as I have.

Today, I'm running in the 10k River Bank Run. I'm running with my husband, Dan, who's been with me every step of the way. He trained with me these last few months so that I could make it today. (He hates to run too!) I'm also running with my dear friend, Erin. I have not been able to train with her as much as previous races, but she has been a great encouragement to me too. The only one missing from my training is my pooch, George. He ran every day with me. Poor boy, he's not here today.

Do you know the song, To God be the Glory? That's what I want my life song to be:

How can I say thanks
for the things you have done for me
Things so undeserved
Yet you give to prove your love for me
The voices of a million angels
Cannot express my gratitude
All that I am or ever hope to be
I owe it all to Thee


To God be the glory
To God be the glory
To God be the glory
For the things He has done
With His blood, He has saved me
By His power, He has raised me.
To God be the glory
For the things he has done

Just let me live my life
And let it be pleasing, Lord to Thee
And should I gain any praise,
Let it go to Calvary.

With His blood, He has saved me
By His power, He has raised me.
To God be the glory
For the things he has done. 

And today, by the grace of God, I run.

Function MRI and Thanksgiving

Whatever floor and hallway the MRI machines are on, they have butterflies painted on the ceiling tiles. Every third or fourth tile is painted. I wonder if they put them there to entertain the many people lying flat on their backs heading to or from or waiting for an MRI or CT scan. When I was in my drugged state a week or so ago, I wouldn’t know much about what was going on, but when I saw the butterflies, I thought, I must be getting a CT scan now.

I’m a little freaked out to get another functional MRI. I’m just worried about the die they put in at the end. I’m eating now, and there’s definitely something to throw up in my stomach!

The MRI goes off well. I did get sick at the end, but I made it long enough to get the pictures needed. Whew!

This puts us somewhere around Thanksgiving. My poor parents never though they’d have to eat Thanksgiving dinner in a hospital room again. When my brother was diagnosed with Juvenile diabetes, he was in the hospital for 9 days over Thanksgiving. It was surprisingly similar to that time. My family ordered trays from the cafeteria, and we all sat in our little room eating Thanksgiving dinner.

We had a lot to be thankful for. God had watched over me wonderfully over the past weeks. He had provided lodging for my parents. He kept everyone safe as they traveled from near and far to visit me and brighten my day. He is just a good God.

The other great thing about Thanksgiving was the Andrew and Kate. They came to see us and brought pumpkin pie still warm from the oven. I don’t know about you, but I LOVE pumpkin pie. It was delightful! It was good to see them too, not just the pie!

Speaking of Kate, she is a nurse and works at Spectrum. She spent many of her breaks eating dinner in my room. I wasn’t conscious for all of her visits but it was wonderful to see her. I felt a little safer knowing she was checking up on me.

We have a date for surgery! It will be December 3 with the embolization procedure on the 2^nd. Everything is looking good so it’s back to a regular room to await surgery. I’m too high of a risk to send home, so we have to wait it out at the hospital.

Poor Disgruntled Orthodontist Assistant

For health insurance reasons, I’m sure, my doctors called my orthodontist office to have them come take the braces off. Now for HIPPA reasons, I’m sure, they wouldn’t tell the orthodontist why we are taking the braces off. Now orthodontists strongly dislike taking the braces off before the appropriate time. So you can imagine the assistant who came to my room in ICU was less than thrilled.

Assistant: “So…WHY are we taking the braces off?”

Note: She was kind of snotty about it. Ok, you’ve been summed by a neuro-surgeon’s office to come to the ICU of the biggest hospital in town to take the braces off one of your patients. Don’t you think it’s serious?

Me: “Oh, I’m having brain surgery! The braces were messing up the MRI.”

Assistant: “Oh!”

Like the kind of “Oh’ like “I’m an idiot, sorry for being so mean, you poor thing, I’m so sorry.”

Me: That’s right! Don’t you feel stupid? Do you think we’d take them off just because I felt like it??

Snap, snap, off come the braces. She tries to scrap the glue off, but I can’t handle it. So we leave it on.

The girl was even so nice as to come back the next day, take impression, make temporary retainers, and bring them back to the hospital. All on her day off! She loves me now!

Now back to the MRI machine…

Braces and MRIs Don’t Get Along

I have no idea about time at this point. I did have to know what day it was for my many neuro checks, but as far as tying dates to events, I no longer have a clue.

I went in for my regular MRI sometime before Thanksgiving. All went well. I think I even fell asleep because it sure didn’t seem to take 45 minutes. Lucky for me, I’m not claustrophobic! The MRI doctor was very impressed with my calmness during the test.

A few days later, I need to have a functional MRI done. In this test, you wear a helmet with a screen that covers your eyes. A computer program plays different things that you must do while the MRI is running. The purpose of this test is to map out the motor, vision, and other functioning areas of the brain. For example, one of the part is following a dot around the screen with your eyes, another tells you to open and close your fists. You do these sessions for about 30 seconds to a minute several times over. Then at the end they put a die into your brain and you repeat the same motions. I think this gives a clearer picture. I don’t know.

So la-de-da were going along with the test, it takes a lot longer when you’re awake! Then they put the die in, oh man, it made me sick. Good thing there was nothing in my stomach to puke up!

I forgot to mention that I had an emergency cord in the machine to pull if I had trouble. I pulled that sucker as hard as I could. I was ripped out of the machine in seconds. The gear that took at least 10 minutes to put on came off in an instant. I wonder if this happens often?

The doctor thinks he got enough even though I was pulled out early. I hope so!

Within the next day or so we get word that my braces caused all kind of reflection off the MRI. The results were not useable. The doctor tried to piecve things together, but really for this surgery, I needs to be done right.

Off come the braces!

The Next 5-8 Days: November 18-23 or 25ish

This next week-ish is extremely fuzzy to me. I will tell the details I remember, but it will be very flow-of-consciousness. No pun intended.

This hemorrhage was significantly worse than the first. I was on narcotic pain medication for at least 5 days. I slept all the time. I was woken up all the time for neuro checks. I hate neuro checks. Let me tell you about them.

“EMILY??? EMILY???” the nurse on duty loudly calls to wake me up.

Light sleeper here, please don’t yell.

“Emily, can you squeeze my fingers?”

Yes. Same as last hour.

“Emily, can you hold out your hands in front of you, palms up? Now close your eyes and keep them there.”

Yep, again. Same as last hour.

“Ok, bright light while I check your pupils.”

Get it over with so I can go back to sleep.

Must say, their flashlights needed new batteries. They weren’t too bright. Anyways, this happened every hour all day and night.

During this time I didn’t eat much or anything at all. I remember waking up and seeing 3 trays stacked on my counter. I hope Dan at the meals. I don’t know.

My parents got a room at the Renucci house connected to the hospital so they could be there all the time. I think, I don’t know for sure, that my parents and Dan are taking shifts staying with me.

The weird thing about crania bleeds is that the blood has to drain somewhere. Crazy, right? Who knew? As the pain and headache began to lessen, the pain (aka pooled blood) moved down my spinal cord and nestled right around my tail bone. I can remember going down for one of the many CT scans and saying that I really felt fine, but my butt was SO SORE. Ha! I didn’t know until later that the draining blood was causing that problem.

Now I wasn’t sleeping this whole time, but the drugs have taken their toll on my memory. I know during this time the doctors are trying to get the proper tests done so they can schedule the surgery. Again, all the vitals are stable and the hemorrhage stopped on it’s own. This is very good news. Now the AVM is in my right temporal lobe right up against my motor strip. They think it isn’t too big, but big enough that action must be taken to lead a normal life. The new medical technology allows them to create a model of my brain so they can operate as precisely as possible. The items needed are a regular MRI and functional MRI.

Time for the next obstacle from the most unlikely source…

A Very Long Night: Tuesday, November 17-Wednesday, November 18

I should back up a minute and point out another way God looked out for me.

I do not like needles. I do not like blood. When I have to get blood work, I make them lay me down and use a small needle. Get the picture?

When you are in the hospital, you have to have a working IV port at all times, and it has to be changed every 3 days. For safety and health reasons, I’m sure you can see this is a reasonable rule.

Tuesday night, I tried to get them to take my IV port out because I was going home the next day. In less than 12 hours, come on! They refused citing above hospital policy. I was quite put out, if you can imagine. However, if I had not had that IV port, not only would I could not have gotten the pain taken care of as quickly, I would have had to let them put it in when I was already in excruciating pain. I believe God protects us through other people and rules.

While I lay waiting in the ICU for the ok to get pain meds, I found that if I slightly raised my head off the pillow then set it back down, it offered a brief second of relief. Now, I didn’t talk too much because it hurt to do so. Dan kinda freaked out when I started this slow-motion head bobbing.

“What are you doing? Is something wrong??”

Nope, it just gives me a little relief. Isn’t it odd the things I remember?

Ok, so now the nurses have the go ahead from the doctor to give me meds. The drug they give me is Fentanyl. It’s quite strong, one hundred times stronger than morphine. True fact! They started me on a half dose.

Wikipedia says it has “a short duration of action and rapid onset.” Um, yes, totally. I’ve never had the need for such strong pain medication before, but this is what I want with me when I need it! I don’t know the actually amount of time it took to start working, but I’d say 1 minute. Maybe less. It goes directly into the bloodstream and starts a’ working! Now about the short duration: the dose lasted one hour. Not even that at times. As time went on, I increased to a full dose and was asking for more before the hour was up.

That night Dan called his best friend/brother J. I don’t know what time it was but J stayed up with me all night. Dan was a wreck and badly needed sleep. Once J got there, he felt like he could relax. I don’t know what Dan would have done without him there. J is a true friend.

I remember trying to say hi to J in the middle of the night, but I couldn’t make the words come out. It hurt too much. I was comforted to know he was there.

I remember my nurses from that night: Erin and Jen. They were awesome. They were in my room all night administering the medication.

Parents are called, mass email sent out for prayer support, doctors awakened, and it looks like I won’t be going home for Thanksgiving.

6% chance of a second hemorrhage in the next 6 months. I had one 5 days later. You never think you’ll be in that 6% do you?