Day 4 – Moving Day (by Sherry)

Darren was in the process of being moved to the 8th floor. While moving him he was worried about where his TV was. I heard he took like 3 or 4 bites of oatmeal and that was all. He is still on a sodium drip IV. They gave him a suppository and a little later he tried to go to the restroom in the room. He could not understand why he couldn’t get out of his bed. Darren tried to argue with us. He also started to touch his head dressing which made us nervous.  We were able to get him a bedside commode which was better. He is still swollen on the left side but he was able to open his right eye a bit more.

He continued to sleep…

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The nurse came in and gave him a shot of Heparin in his stomach to prevent blood clots.

It took over an hour to get him to decide on lunch and he thought it was supper time. He finally decided on roast turkey with gravy. He ate about half of it. I forced him to eat.

He finally woke up a bit more when his Aunt Tammy came to visit. She stayed about 30 min or so.

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He also ate more of his lactose free yogurt. He ate a whole container! So proud of him!

So keep praying for seizures. He has a Nurses Aide keeping watch while we are gone. If you would like to visit Darren please contact me and we can discuss a good time to come. Also please send him an E-card at the KU Med website and they will print them for him. We need seizures!! He also needs to eat!

Thanks also to the people who have sent gift cards and prepared meals for us.

Watch for updates tomorrow.

Day 3 (by Sherry)

Well our son came along to visit his Dad today. When we got there Darren’s left eye was so swollen he could not open it.  It had swelled a lot since I had left Friday afternoon.

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Our son spent a little time with Darren before he was whisked away to the Plaza to spend time with Grammy and PaPa.

When the nurse came in she was giving him his meds and named them and said “Lamictal” and I stopped her and said “The doctor told me he was stopping the Lamictal” so she called him and they had changed their mind. The would cut his Zonegran in half at night instead. So he continues his Lamictal.

He was not excited about doing much because his face and eye were so swollen. He did try to watch TV but he really just listened to it. He was still very sleepy.

He had a bath by two nurses and we learned they shaved both of his legs in surgery. Go figure! He loved that bath!

The Physical Therapist  person came in and got him up and into the chair. In classic Bud-ness he laid his best burp on her with a “Oh yeah” afterwards. She laughed and said “Mr. Long I remember you doing that to me last time. You made me smile today.” Darren moved into the chair. He did not stand for long, he was very unsure of himself.

He loves the chair! He sat there most of the day and watched/listened to the TV. He got an ice pack on his eye and it helped a lot.

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He is still not eating enough. If his sodium levels go too low he can have a seizure and it will mess up the data they need from the EEG leads. So I wore my Army pants and my Army Hooah shirt and had to be General Sherry on him to eat! He ended up eating some fruit and half a hamburger. He had eaten some oatmeal earlier and some of his yogurt. For supper he ate half of a half of grilled cheese and some jello and 2 bites of carrot cake. It still was not enough. He had to drink salt water “shots” and they ended up putting him on a sodium drip in his IV. He can’t drink water when they do that, he can only drink Soy Milk (because he is lactose intolerant) and Gatorade.

There are no rooms on the 8th floor yet so he is still in ICU, the 9th floor.

He gets asked:

“What is your name?”
“When were you born?”
“What is today’s date?”

…constantly. He has some unique answers. He always says his name correctly. When it comes to his birthday he would say: “The Ides of March” which is true, but most people don’t know what that is. Today’s date he struggles with. He had the number 27 stuck in his head today. He used it for the year a lot. Hmmmm…  Oh they ask him “Why are you here?” He replies “to see all the pretty nurses.” Then he says “Brr-ainn Surgery” in a funny voice.

Darren did not get nausea or throw up in any way, so that was good. He is not using his right arm at all. Now I know this is his tremor arm but at home he uses it occasionally for things but not at all at the hospital.

There is a nurses aid in the room at all times, helping with toileting and other issues. They are to watch him also for seizures and for him to not touch his EEG leads.

Oh! While his parents were there the Anesthesiologist came in and said if the nodules in his throat were still swollen they weren’t sure if they could do the 2nd surgery.

We need prayers for those nodules and for seizures. I know it is strange but those doctors need more data so they can determine the best piece of his brain to remove.

Day 2 (What Day Is It??) – (by Sherry)

Darren was pretty groggy when I finally got to the hospital. My job was to get him awake as much as possible. Oh he did not like that at all. He was “a grumpy cat” grumpy. All he wanted to do was sleep. We did get him to eat 1 graham cracker and to drink some Gatorade. That was all he ate while I was there. He was still a bit nauseous from the anesthesia. The doctors showed up and asked him what the date was he said “12-24-13″ and the doctor said “right!” I stopped the doctor and said “That’s not right!” The doctor laughed and moved on.

They checked his muscles and movement. The incision affects his right jaw so it is painful for him to open his mouth very wide. His headaches are frequent (duh!). He really preferred to sleep.

Then about 2:30 the tall blonde Occupational Therapist showed up. That got him to open his eyes! She got him to sit up on the edge of the bed. He started to feel sick so he laid back down. That was when his left eye began to swell and bruise. By the time I left it was difficult for him to open his eye at all. They are just making sure nothing more happens.

He rested for about 30 min and the Nurse’s Aide came in and gave him a bath. He was awake for that! She got down to his feet and started to take off his brown socks and he said “DON’T YOU TAKE OFF MY BROWN SOCKS!” See he knows the code Brown socks means you can get out of bed. Yellow socks mean you can’t. He got yellow socks after he pulled his EEG leads out of his head last November. She promised him that he will get to keep the brown socks on, she was just going to wash his feet.

After she left, Darren was back to sleeping and doing not much of anything else. He was downgraded from ICU and we are waiting for a room on the 8th floor. Probably will get a room there today (Saturday).

Oh, he was having a hard time going to the bathroom so he had 3 Ultrasounds of his bladder as well. He was not drinking enough though. The surgeon came in and said he needed to eat more so he ate some yogurt (lactose free).

The doctor scheduled a “CO” a companion to stay with Darren overnight in case we fall asleep. This person’s job is to watch him for seizures and to stop him from pulling his leads out. Darren’s parents were relieved to hear that. They wanted to be awake during the day to spend time with Nathan on the weekends.

Long Day Indeed (by Sherry)

Got to KU at 5:30am. Sat in Surgery waiting room while we waited for the MRI dept to open. They put him in and his arm was trembling so much he had to lay on his arm. Once that had finished, we went up a building floor and caught the surgeon coming in. Darren asked him where exactly he would cut. He showed him, then Darren smiled and eased up a bit.

Now we are back in the waiting room his surgery isn’t scheduled for another 2 and a half hours!

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They called him back and I met with the Anesthesiologist and the Surgeon. They marked up where his incision would be on the left.

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They whisked him off to surgery, where the discovered he had 2 large nodules at the back of his tongue. After surgery an ENT Doc came and took a biopsy of each nodule, we won’t find out anything about that for a while.

When they began to cut into his skull the saw they used was not big enough. Bud’s skull is double the thickness of a regular persons!! So they had to stop and find a bigger saw and get it sterilized before they could begin.

This is me (Darren) writing this bold area: 

I remember being shipped up to the surgery room and being “hooked up” to get ready for my brain surgery. After already laying there on the surgery table, I was told…

“Okay, Darren, get relaxed and we can all be ready to get this underway after you fall asleep.”

“Hold On! What are we doing today?,” I said. “What is the plan?”

Everyone kinda stopped…. Then one person spoke up and explained the whole thing. (I don’t remember a word that was said…)


“Eh… OK. That sounds good. I’m ready. Lets go.” 

His surgery was from 11:20 am until 5:30 pm. He got into his room about 6:30 pm. They did a CT Scan before he came up because he was difficult to wake up after surgery.

He got all checked in and I spoke to him, but really all he wanted to do was go back to sleep and continue his dream about his nurse. He did ask me “What happened with my angioplasty?” I said “Bud, that is a big word for you.” He replied “I know.” I discovered he meant anesthesia. So I told him it was fine.

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