This might be over. :-( (by Sherry)

It is 3 in the morning. I went to sleep about twelve or so because Darren was threatening to take his leads out of his head and he tried to take out his IV line a well. He seemed to be sleeping so I fell asleep.

The next thing I know he is yelling OUCH and standing at the side of the bed literally pulling the large strand of leads as hard as he can. I move to open the door and get the nurse and I turned around and found him standing in a pool of blood. Blood was coming down his face as well. He was so disoriented!

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He ended up pulling 5 or 6 leads completely out of his head!

Had four nurses come and help. They rushed him to get a CT scan after they got him cleaned up.

He keeps repeating the phrase ” I want to go home.”

New room, need to stay strong… (by Sherry)

Today was a downer. Darren woke up every hour last night on his own. When the lumberjack doctor came in he said Darren had another seizure which surprised me because I was there all night. I only slept 3 hours last night. I don’t know how I missed it.
Anyway,  Darren, all of a sudden  got mopey. He said he was done. He wanted to get the leads taken out and he wanted to go home. He refused to eat. We had Psych come and visit with him. They mentioned some depression medication. Those medications usually take four to six weeks to take effect. That won’t do any good.

They asked him what he does for fun. He said volunteer at his son’s school. So while he finished with them I sent an email to the school and when I picked up his son and had cards from the students in his class. Darren smiled for a minute maybe two.

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I added some motivation from Zooey Deschanel (sp)

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We also brought some Captain America toys.

He did get moved out of ICU. His new room has a waiting room in it. Darren has to sleep with the lights on which is something I can’t do. I keep forgetting my eye mask. The spare room is darker and has it’s own TV as well.

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Our Team Bud hoodies arrived today too. So we brought Bud his. Thank you to everyone that has sent an ECard. Darren hasn’t received them yet. I hope they arrive tomorrow. If you would like to send one there is a link on his Facebook account, or you can visit the KU Hospital website under the title of Visitors. They told me earlier today they wanted to add some meds that will help him sleep and stimulate his appetite but I was told they didn’t want that because it can interfere with the seizure data.

When I came back Dr Uysal came into the room and said they did not verify the second seizure, but they got excellent data on his one seizure from Tuesday. So Monday Darren will have his second surgery. We don’t know what time yet, but they want to keep moving forward.

Tonight the Nurse gave him that pill that stimulates appetite and helps with sleep.

Wednesday already? (by Sherry)

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Darren has had an OK day. Nothing too exciting no seizure activity. They only removed the Depakote ER last night. They are going to wait to taper off the Zonegran and Lamictal. They want 4 more seizures but not on the same day.

He moved to the chair today and has been there most of the day.

Oh his MRI was good. No new bleeds.

He has slept most of the day away..he hasn’t had any pain pills since noon. He finally ate some of his special yogurt, but then threw up. He has low sodium count so he has to drink salt water. They tried an Ensure drink But he said it was nasty. He has drank some Gatorade and kept it down.

We just ordered some applesauce and some jello for supper.
He still does not have a room downstairs yet. So his room is still in ICU.

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See his magic pole he gets to travel with?
We had a special visit from his Aunt today! Darren was excited about her visit and kept asking me when she was coming.

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She took a break from the grandbabies, to get some quiet time and to learn her way around The Plaza. Ha ha ha.
Now for some new pictures of his head. Warning. They aren’t pretty.

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Top of his head

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His left side. Still a bit swollen.

I’m gonna stay another night and go home after the doctors come by in the morning.
Bud seemed more awake 30 minutes ago when I decided I was too tired to go home tonight  Maybe we both will sleep tonight.

Sleepy day Seizure #1 done (by Sherry)

After all the doctors and interns came through, they removed his catheter. Right away Dr. Uysal and Mary came in. There was a giant mess of his leads, so after much discussion, two EEG staff came back and spent about 90 minutes untangling him.

Dr.Uysal gave directive that his evening seizure med would be completely stopped tonight.

He needed an MRI. Occupational Therapy came in and helped him get dressed and get in the chair. When they sat him up he buried in the girls face. He got in the chair and the EEG person was trying to get a second camera rigged up. She was unsuccessful and left the room.

Twenty second later he started gulping for air and I thought it meant he was going to throw up again. I handed him his bucket. He pushed it away and started convulsing. It lasted about 2 minutes. I pushed the video button but forgot to push the nurses button.
He was so disoriented. They asked him his name Darren Long he said. (great) then they asked when is your birthday? Darren Long, he said. What year were you born? He replied Darren….Long…darn lasagna. Dirty lazy. Then his words mumbled off to silence. He was so groggy. It took about an hour and a half for him to be able to answer correctly.

1:45 pm I am getting ready to leave and they move him back to his bed where he burped in the girls face again. Then they say he it’s next for an MRI. The Social Worker came in and talked to us. Dr. Camarata stops in. He was waiting on the MRI. They also want him to eat. I suggested his favorite lactose free yogurt. Camarata said go get some!

I left while they were taking him off the monitor so he could get his MRI.

I picked up our son from school and took him to his bowling league and supper, then took him to scouts. Took a quick shower and stopped by the store for the yogurt and I got him some Oatmeal Creme Pies and there was an accident on I-35 I sat for an hour there. Finally got back to hospital, he was gone! They were finishing up his MRI. He apparently kept getting bumped.

They wheeled him into the room and he said “This is a new room!!!”

We explained the day to him. He was a lot more coherent and he went to the bathroom with help and them his headache returned. They gave him some pain meds and antibiotic and he and I slept in 3 hour intervals.

A long night indeed (by Sherry)

I returned to the hospital do keep an eye on Darren.

I soon learned that the anesthesiologist had given Darren a nerve blocker and it was starting to wear off.

He was so uncomfortable. We tried neck rolls and sliding him up higher in the bed, they even gave him an ice pack for his head, which he slept with for about an hour. Next they tried IV pain meds which last about 90 minutes. So they brought in pain pills next. Well….he would get very nauseated and throw up after taking them. He asked the nurse and I over and over “What time is it?” When we told him he would let out a disgusted sigh.

I guess it was about 3:30 he moaned in pain again but this time he complained of chest pains. They immediately did an EKG but it was normal. So they did some more blood work. He had his bed raised and finally got some sleep.

He shouted from his bed once “Hey! Did you put your word puzzle back in the freezer?” He asked me a second time so I answered “Yes” he closed his eyes and slept for about an hour.

The EEG chick was in first this morning and he opened his eyes when he heard her voice. He had come unplugged sometime but since there was no seizure last night, it was OK. She said the nerve blocker was given because his head was in different positions for each set of holes in his skull and he had to maintain each position for two hours at a time.

Next Dr Solomon who is with Dr. Camarata and was present during surgery came in. He is like a big lumberjack. He explained the nerve blocker too. They tested his strength and asked him what day it is. He passed!

Another doctor from Camarata group did the exact same thing.

Now nurse Jordan is with him. Gave him some fentanyl for pain. He has Hydrocodone in a cup but he isn’t staying awake long enough to take it.

They would like to move him to the regular floor later today.

We are waiting on Dr Uysal to come in and start weaning his meds.

Darren told me to blog “I have a headache.”

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His pretty staples and rainbow leads.

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They want him for an MRI this morning to check everything.