NICU

Edward was placed in a room in the Neurological Intensive Care Unit. The patient rooms are arranged in a circle around a central nursing station. The room is large compared to a 'normal' hospital patient room. The bed is centered in the middle, the patient faces the nursing station. Behind the patients bed is a wall covered with machines designed to keep people alive. Machines that monitor the patient's breathing, pulse, blood pressure, heart beat, temperature, and stuff I don't even know about.

When we were allowed to see Ed, we were pleasantly surprised by the lack of a 'mummy-wrapped' head, facial swelling and bruising. Dr. Walpert passed on the information that upon waking from surgery, Ed responded to her voice, answered questions, and was, in general, doing quite well.

It was still a shock to see him. My brother, B2, cried uncontrollably and could not be consoled. When Ed would open his eyes, B2 moved out of his line of vision so his dad couldn't see him cry. At last Ed caught a glimpse of B2, and when he saw him crying, he cried too. I tried to explain to him that my little brother, his son, was crying because he wasn't used to seeing him in a hospital bed, with tubes and needles. My brother lay his head on Ed's chest and his body shook as he cried. Ed cried too. Finally, B2's girlfriend led him outside. They decided to go home for awhile. Later, when they returned, B2 was composed. I'm sure T told him he had to be strong for his dad.

At this point, Ed had no idea what Dr. Walpert had found inside his head. He would wake for a few moments at a time, then drift back to sleep. It seemed miraculous that he could talk, that he wasn't very swollen, that he had no memory loss. He did experience bouts of nausea and it was painful to watch him. Mostly it was dry heaves, and it was heart wrenching to see. But overall, he looked and sounded pretty good.

Ed attempted to eat food, but it nauseated him. I tried spooning some beef broth into him on the second day, and was met with gags and wretching. I immediately put that away and tried the frozen lemon gellato. That went over much better! On the 2nd day he asked the nurse for peanut butter crackers. That was a sign he was getting better!

The incision in his scalp and skull was horseshoe shaped. The open end of the horseshoe facing toward his left ear. Dr. Walpert didn't shave that whole side of his head; instead, she only cut away a line of hair in a large semicircle. She even gave the hair she cut off to my mom in a ziplock baggie. That made her seem more human, that she realized we, or Ed, might want to keep his hair. There was also a port of some sort in the right side of his neck which would only remain for a couple of days.

The NICU nurses and doctors were amazingly gentle, sweet and caring. They kept telling us how sweet Ed was. How agreeable he is and easy to take care of. Ed had several male nurses, even one big burly guy with tattoos. But the young pretty nurses were his favorites! I think he was truly enjoying all the attention he got from them. Yet, he was anxious to be moved to a regular room, because that was a step closer to going home.

Ed stayed in the NICU for only three days. On the fourth morning he was moved to a regular hospital room. He had amazed us all by how well he was doing!

Long Words that are Hard to Say...From the Lady in a Red Dress

Dr. Walpert was wearing the red dress, the high heels, and the leopard print shawl when she sat across from us to give us the news. Her make up was perfect. Her hair was perfect. She still looked as if she were about to walk into a Christmas Party.

She did not beat about any bushes. She told us that Ed's tumor was cancerous. She told us the cancer did originate in the brain; it did not metastasize from another part of his body. I thought that was good news, and expressed my relief. She said no, that is not good news. She said that his brain cancer is called Glioblastoma Multiforme. She told us it is a very agressive form of fatal brain cancer. If she had slapped me in the face I would not have been more stunned.

She told us he did do very well in surgery. She was able to get most all of the tumor, but did have to leave a 'rim' of it inside the brain, as it was too risky to go too deep. She said chemo and radiation may help get rid of 'rim' left behind. She also said that these types of tumors send out little 'seeds', or cells, to other parts of the brain, so it was very likely that those seeds would grow to be new tumors.

Dr. Walpert told us Ed would remain in recovery a few hours and then be moved to the Intensive Care Unit. The nurse and/or Dr. Walpert warned us that when we saw him in ICU, it was highly possible that his head would be wrapped like a mummy, that he would have tubes coming out every where, and his face may be severely swollen. We were warned there may be some memory loss and loss of speech. Of course, we imagined the worst.

Now Dr. Walpert told us since we would not be seeing Edward for a few hours, now would be the best time to go have lunch. And she left us. We cried. We worried. We were stuck to those chairs. Except me, I cannot sit. I went out into the hall and made some calls. I cried. A hospital pastor came by and prayed with us and offered us words of comfort. We cried some more. Me, B2, and T decided to go try eat lunch. Mama didn't want to go. She stayed in the family conference room. She said she needed to be by herself.

You can read more about this type of brain tumor by going to these links:
http://www.csmc.edu/5305.html
http://brain.mgh.harvard.edu/PatientGuide.htm

Brain Surgery

Ed, momma, me, B2 and T all met at the hospital at the appointed time of 6:00 a.m.

They immediately took Ed to the back someplace and got him undressed and onto a gurney. He had to have his special MRI, one that makes 3-D images that the neurosurgeon uses to guide them in removing tumors.

Reverend Wayne Reed, the minister of my church, came to pray with Ed and us. Wayne told us later that Ed was in a good place spiritually, and that he didn't worry about Ed. He gave us comfort.

Before they took Ed back to get the MRI, we took turns going in to talk to him and offer words of comfort and encouragement. We couldn't help but cry because we were scared and concerned. We talked to him about his surgery and our confidence in his surgeon. I told him I felt good about the surgery, but if something did happen, I knew where he would go and where he would be. I reminded him that even though he was facing surgery alone, he wouldn't be alone, for God would be there with him. He nodded his agreement.

I've never seen my brother cry like he cried that morning. He, like me and Momma, hugged Ed and held on tight.

Dr. Walpert come in to speak with Ed before the surgery. She was not what I expected. She appeared to be in her late 40's or early 50's. She had short, blond, spiky hair. She wore makeup and lipstick. She had on a red dress, heals, a leopard skin print shawl and jewelry. I was rather taken back by her appearance. I asked her if she was going to change before surgery, because right now she didn't look like a brain surgeon. She chuckled and said yes.

The doctor reminded us that she was about to perform brain surgery, and it involved risks. Ed could come out of surgery with problems with memory and speech. She may or may not be able to remove all the tumor. It may or may not be cancer. She explained the incision she would make and that she would have to shave his hair in that area. She said he would be in surgery probably 3 or 4 hours.

They rolled him down the hall and told us he'd probably go straight into surgery after that. We saw him briefly after the MRI and then they wheeled him away once again and we were all relegated to waiting areas. Reverend Wayne said one last prayer with us and soon left. We were alone with our individual thoughts, worries, hopes, and prayers.

After a short time the waiting area came to life as more patients and their families arrived. We begin to hear other illness and surgery stories around us. We were all so sleepy, tired and hungry. No one wanted to eat breakfast in front of Ed since he couldn't have any food before surgery, but now our stomachs were complaining. We drank free coffee and nibbled on snacks and flipped through magazines. We traded places on chairs so the same person didn't always have to sit on the 'hard spot'. Off and on one or two of us dozed while the others kept vigil for the 'report lady'.

The 'report lady' was an older woman with a very sweet disposition and a ton of patience. She came out ever so often and gave all us waiters little tidbits of information. 'Your dad's first hour of surgery went well'. 'Your sister will be in recovery for about an hour'. We all looked up when she walked in the room, eager to hear her encouraging words.

By 11:00 or so, the 'report lady' came in and told us Ed was out of surgery. She said the doctor would meet with us shortly to give us a report on what she found. We were cautiously encouraged that he was out of surgery so soon. We automatically assumed that meant that things had gone well and that it must have just been a small, non-malignant tumor that was easily removed and was no big deal. But reflecting back now, I realize he was in surgery as long as she said he would be. It just seemed 'soon' because it wasn't even noon yet.

Another half hour or so went by and the 'report lady' ushered us down the hall to a 'family conference room'. This did not bode well. We saw other doctors talking to families in the hallway or even briefly in the waiting area. We didn't see anyone else being taken into a conference room. This was my first clue that we were excited and happy prematurely.

Me and Momma sat on one little sofa and B2 and T sat in arm chairs on either side of us. Dr. Walpert sat across from me and Momma. The look on her face was a bit unreadable. She was kind, but direct, when she delivered the blow.

A Long Day of Waiting

Dr. Walpert spoke with Ed while he was in the hospital and scheduled his surgery to remove the tumor for December 3rd. She made a very good impression on Ed. He said she was smart and seemed to care. He said she was very nice. I don't think it hurt that she was very attractive.

December 2nd was a day of waiting. My younger brother's (B2) girlfriend, 'T', volunteered to take Ed and Momma to the hospital for all the pre-op blood work, tests, and paperwork. They arrived early, and left after 5:00pm. Ed had blood drawn, a chest x-ray, and filled out a mountain of paperwork. 'T' was steadfast in her support...sitting with them, translating for them, and writing. She also kept me and B2 updated via text messages and phone calls. When they left the hospital at 5:00 pm they thought they had done everything. But then they realized he never got the final pre-op MRI of his head. Luckily, when 'T' called the hospital and reminded them Ed was supposed to get an MRI, they said they could do that just before surgery the next morning. They were all three tired of sitting in the various waiting areas of the hosptial admitting and testing areas.

I don't know what was going through Ed's mind that night when he went to bed. I spent the night with them so I could be there ready to take them to the hospital very early. He had to be there at 6:00 am. I do know that I didn't get much sleep, and I do know that Ed and Momma got less sleep than I did. I went to bed at 11:00 pm and I heard them building a fire in the wood stove around 3:00am, and then my alarm went off at 5:00am. I took a bath but didn't wash my hair. I went to bed with my makeup on. I slept on my back as not to smash my hair or rub off my make up. When I got up the next morning all I had to do was 'freshen up' and get dressed.

It was a day that no one looked forward to. But a day that had to be lived.

Words you don't want to hear at Thanksgiving

That first day in the hospital, this second trip to the hospital, we got the news that Ed had a mass on his brain. Dr. Cuff, a neurosurgeon, told Ed, and then told us later, that more than likely this was a cancer. He told us that it would have to come out. He was referring Ed to his partner, Dr. Kimberly Walpert. He insisted that Dr. Walpert was an expert in her field. Call me prejudice, biased, or whatever, but I wasn't too sure about having a woman operate on Ed's brain.

Ed spent Thanksgiving in the hospital. He had hospital style turkey and
dressing, and sweet potato souffle and chocolate pie. He said it wasn't that
bad. I took him some of my food later that evening. I ended up eating the chocolate pie he didn't eat. It was very good. He said my sweet potato souffle was better than theirs.

Mama spent several nights with Ed in the hospital, sleeping on the pull out chair. She said it was very uncomfortable. Us kids - me, my two brothers, my sister-in-law, my younger brother's girlfriend - we all spent time at the hospital visiting and trying to show support.

On the other page, we had to break the news to my uncle Larry, who was still in the hospital himself, recovering from open heart surgery; that Ed had been taken to the hospital with seizures again. Larry cried so hard that we could not understand his words on the phone. He was already in pain from his surgery, and now his body was racked with pain from the emotional hurt. We felt like Larry had saved Ed's life from the first seizure. Larry, like us, thought Ed was in the clear. We hated to tell him this news while he himself was ill, but knew he would be more upset if we kept it from him.

After we learned about the brain tumor, we decided it was best not to tell Larry that part of the ordeal. We told Ed if he spoke to Larry on the phone, not to mention the tumor. But Ed was on medication and the first time he spoke to Larry on the phone that was the first thing he said, 'They found something on my brain'. It couldn't be helped.

On Friday, November 28th, both Ed and Larry were released from their hospitals. Ed from Athens Regional, Larry from Gainesville. Both were happy to be going home.

Ed, who had never taken much medication other than high blood pressure and the occasion pill for vertigo, was now taking 6 or 7 different medications; high blood pressure pills - two different kinds, cholesterol meds, anti-seizure medication, steroids (to reduce swelling in the brain), and two different inhalers for his emphysema.

An appointment was set for Tuesday, December 2nd, for follow-up. The strange roller-coaster ride of the unknown was about to begin for Ed and all of us. The flood gates of hospital visits and doctor appointments and information overloads were about to open.

The Second Siezure

I had just walked into the office on the eve of Thanksgiving when I received a call from my brother again. He told me our dad was on his way to the emergency room again. He had had a second 'episode'.

According to my mom, she and Ed were making breakfast together. She had turned away to do something and Ed was going to take the biscuits out of the oven. But when she turned to him, he wasn't there. She looked and he was sitting down at the kitchen table. She went over to him and said "Ed, what's wrong"? She put her hand on his shoulder and when she did she said he went into full on seizure, like before.

She said he was jerking so violently that he fell to the floor, hitting his head on the floor. She tried to call a neighbor with one hand and hold his head with the other. She felt like he couldn't breath because he was clenching his mouth so tightly. She first tried putting her fingers in his mouth but said he was biting down too hard, so she put a spoon in his mouth. She felt like that helped him breath. The neighbor called 9-1-1 and the paramedics arrived shortly. She or the friend called my brother, and he called me.

Mama said when the paramedics arrived the seizure was mostly over, and he was mostly conscious again when they loaded him into the ambulance. My brother went with Ed to the hospital and me and Momma followed shortly, even though it seemed like it took forever for her to get ready. My sister in law was there, and my aunt. Maybe more people, I can't remember.

By the time we got to the hospital, my brother told me that this time the hospital was listening to us that we felt like this was a seizure, not a heart attack. They had done a brain scan and saw a mass on his left temple.

This was truly the last thing we expected to hear. I think it was such a shock to all of us. Ed was sitting up in bed when we saw him. He seemed to be in shock or maybe he blocked out the news. He was so calm. We were too, at this point. We didn't know what to think or what to do. We had never dealt with seizures or 'masses' on the brain.

Not only was he calm, but very weak from the seizure. Yes, they finally agreed with us he was having seizures. Now we were getting somewhere. But not a place we wanted to go.

Four Long Days

Ed spent four long days and five nights in the hospital that first trip there. He was treated full on as if he'd had a heart attack, or at least as if he had an irregular heart beat. They catheterized his heart and did exploratory with the intent to cauterize some over grown vessels that would interrupt the normal electrical impulses of the heart. But they found no over grown vessels.

The third night of his stay at the hospital, it was learned that my uncle Larry was hospitalized and would be having quadruple by-pass surgery the following day. Larry is my mama's youngest brother and at 64 he has a lot of heart problems. He and Ed are very close. At first we decided to keep one's ailments from the other, but that didn't work well. It was just too hard to keep secrets. Both were upset by the other being ill.

Ed spent Tuesday, November 11, through Saturday, November 15 at Athens Regional Medical Center. Everyone there is helpful, nice, accommodating, and thoughtful. The nights my mom and brother stayed all night at the hospital they helped fix the pop-out chair for a bed, gathered pillows and blankets, and offered moral support. We couldn't be more pleased with how well Ed and ourselves were treated.

Ed was glad to get to home on Saturday. As stated in the previous post, he was sent home with a heart monitor and instructions to follow up with a cardiologist. We really thought all would be well. We had Larry to worry about now. He had had quadruple bypass surgery...open heart surgery. He was doing well, but was in a lot of pain.

We really thought Ed was in the clear for the most part.