Author: Darren Long

A blog about me, my meds, my brain surgeries, my hospital stays, my doctor visits, my life... la la la...

The Plan as of Right Now (by Sherry)

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Wow! What a day!

As of 6pm the plan is to remain here through the weekend. No surgery today. They (doctors) analyzed data all day. They think his incident this morning was a seizure. They were texting each other in between cases and there is some minimal bleeding inside his brain. They do not want to risk any more damage to his memory or possibly cause paralysis. So after going back and forth all afternoon the plan is eat, rest and get blood levels up over the weekend. They also will continue monitoring him for more seizures.

Monday, find an available operating room and reopen the holes and remove the EEG leads that are still in place and see how extensive the bleeding is. Then they will close him up and get him back on his meds and by this time next week he will be home.

He will wait a month or two and come back here for surgery #2 and #3. They have data that is supporting that these procedures will stop his seizures.

  • Surgery #2 involves putting leads inside the brain again but only on the left side. Wait for seizures like we did this week.
  • Surgery #3 will be removal of the part of the brain that the seizures start from.

There is a small chance that they will go ahead with #2 on Monday, but the data really doesn’t support that would be ideal.

So there you have it! We will just keep moving forward but at a slower speed.

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He took several bites!

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He has to sleep with all the lights on so they can video him having seizures.

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This is his monitoring screen before this morning

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This is his monitoring after the incident this morning.

Bud is remaining optimistic now that we have a plan. We will just keep chugging along.
Well Bud is getting a bath from a pretty nurse right now. (his exact words)

Still trying to get all those cards to him. The staff here is kinda nimbly today. Hahaha!

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Debra reading a card she brought.

Will blog more when I come back or the doctors change their mind.

Still Going! Given Hope Again (by Sherry)

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Dr Uysal just stopped by the room to chat with Darren. He and Dr. Camarata have been talking all morning.

They will still go in and remove the broken leads and depending on the damage they will either go ahead and remove the leads on just the right side and make the holes on the left bigger and have leads only on the left and keep going on the process (with surgery #2 and#3) or they may tell us that Darren needs to heal from this trauma and come back for the last two surgeries at a later date.

So they have changed their suggestions. Darren told the Doctor he did not want to give up now! He told him he wants to keep going. So there you have it!

We don’t have a scheduled surgery time yet, but it will be today that they go in and survey the damages.

The process is done. (by Sherry)

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Dr Uysal was just here. Darren pulled out 5 leads and of those 5 there are 3 broken, which means they will be taking him back into surgery today and removing them all and closing him up and outing him on full meds again. We are done with this process.

They could not risk him pulling out the leads again.

Since there are some broken leads there is a chance there is some damage that is not on the CT scan so they will have to be careful.

So Darren is upset and very sorry that it happened there was even a suggestion that what he was doing when he pulled them out was having a seizure. But I guess that doesn’t matter right now.

This might be over. :-( (by Sherry)

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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)

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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.