Yep! He Is AMAZING!! (by Sherry)

No meningitis and his pain has been reduced although he will have pain for awhile.

Met with the new neuropsychiatrist for awhile this morning. He worked Darren’s memory hard today. We were even having problems remembering answers. He will see Darren again in 6 months for another round of cognitive testing.

Saw the Epileptologist today and really everything he warned us about regarding Darren’s memory has happened. We discussed this in great length before he started all of this process and again this summer we discussed this. Here we are. You know what? This is where we are at. It is not permanent. It will get better. It may take from 6 months up to 2 years. He will not improve overnight.It will take work and Darren knew that. Another reason to praise his efforts in this journey and more importantly his medical staff! Thank you for believing in this process and not giving up on all the things we ran into along the way that made us stop and wait. Thank You for your gifts and talents in this field, thank you for everything!

They let me transport him to the rehab facility.

Day 18 / 19 … But who’s counting? (by Sherry)

Today was a decent day for Darren. He slept until the Surgeon’s PA came in to check him (Surgeon is off work this week) and Darren was still complaining of his neck pain and could not touch his chin to his chest. Darren’s short term memory is far worse than it was before surgery. He can’t remember names that he was just told. He struggles with the year and the name of the hospital he is at. He was asked my birthday and he got it right!

He went over 8 hours without pain meds last night.

After talking with the neurology team they had decided to do a lumbar puncture to test for meningitis. If he has it then it could have come from the gel used in the closing of his incision or from the leads inside his head. We will get results tomorrow. They also were sending him for a CT scan. Again, we will get results tomorrow.

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Here his Dad is quizzing him with pictures in a book I had made for him. He did pretty good with it. He did say “I don’t know why Scott and Kayla aren’t married yet.” We had a good belly laugh over that one. (You know who you are!)

Briefly met with his caseworker and he had a speech evaluation. He will finish his evaluation tomorrow. We are still discussing outpatient therapy, but we will know more tomorrow.

Oh, I have lost his phone. I am in so much trouble!! But he does qualify for an upgrade.

I stopped at the Lakeshore Learning store on my way home tonight and I spoke with one of the staff persons, Cheryl. She was awesome! She works with a high schooler that had a similar surgery and she suggested some items and some of them Darren & son can work on together!

Hmm…have I forgotten anything? I will add it to tomorrow’s if I have forgotten anything.

Good night! Exhaustion is building up and my emotions are fragile as I write this. I love this man with my whole heart. He does have some mild (so far) personality changes and he is learning to navigate his world all over again and it is hard to see and accept that at times.

Day 17 – Doing Much Better! (by Sherry)

I got to KU Med and Darren’s cousins were visiting. He had just received his hydrocodone and was trying to get relief from his headache. He was sitting in the chair too! They used an alarm on him because he is not to be getting up and walking around by himself. Why they didn’t have this in November?

We learned that the Epilepsy unit now had a pager and they were calling it the Darren Long pager! Too funny! He is famous around the Neurology department for sure!

Darren was moved to the 8th floor which is great news! He had met with Rehab earlier in the day but they had recommended in-patient rehab. Well after moving to the 8th floor, he walked 3 laps and took a shower. He has been eating so the afternoon rehab person said “I think we can talk about out-patient rehab when he gets discharged.” She did recommend a day program but I have not been able to find one nearby our home.

He is still taking high doses of pain med of both pills and in IV. This will have to improve before he comes home.

Darren was surfing the web this afternoon. He read a lot of the comments given on facebook and it is so encouraging for him. I feel bad, but the KU E-cards did not get printed (a long story!). So reading comments on his facebook or blog are great.

He might go home tomorrow (Monday) or Tuesday? We need to get pain in control and get therapies set up. His stitches will be in for 7-10 days. They removed the bandages today.

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We discussed the scar. His Dad thinks the story should be an alligator bite or shark bite. Darren, before surgery, said “I need a zipper tattooed on it.” Hahahaha!

His neurologist will be by tomorrow.  I hope his son has school so I can get to the hospital early. We are to get another inch of snow tonight and I just heard the plow go by from the inch and a half we got earlier today.

Day 16 – Sleep Hubby Sleep… (by Sherry)

So, Darren’s surgery ended about 8:45pm. Three hours long. The surgeon said they removed 3cm of his left lobe and all of the hippocampus. The hippocampus (people have 2 of them, now Darren has 1) organizes your memories and deals with spatial relation.

Darren got into his room around 10pm. He was howling in pain!

They mentioned he might be weak on the right side (nope!). Said he would have temporary speech issues (only lag time giving answers) and they said he might be missing part of his eyesight (nope) so that is all positive!

He was in an extreme amount of pain most of the night. They gave him oxygen to help alleviate the pain and it did seem to help in between dosages of pain meds.

He talked about how concerned he was his sister was out of town again, and he told me to get “it” out of the garage and bring it to him. Never figured what “it” was. He shooed me away to get “it”

One of his “lines” kept “missing” on his monitor and so that went off several times in the night. He has a brace on his wrist to keep it in line now.

We were told those “cool EEG leads” that were inside of his head were ours if we wanted them. So he has a memento when he goes home. We were also told they were $10,000 worth of medical equipment and so to ask for them. So I did during surgery and they had to run them through 2 sterilization/decontamination washes before we could have them.

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They do not have his head in a turban of any kind. They have 3 strips of gauze pads with baby staples attached to his head instead this time.

Oh funny story! Darren (@darrenlong315) follows his surgeon on twitter. The surgeon mainly tweets about Catholic history and events, but we still follow him. We mentioned this to his Hospital Girlfriend and she took the marker they use for marking the surgery and wrote on his head @pcamarata TWEET ME! @darrenlong315. So we all thought this was funny. Well, the surgeon had his intern get him ready instead and the surgeon didn’t see it.

So when the Surgeon came to talk to us I asked and he said he hadn’t seen it. I showed him the picture and he laughed. I know Darren will be disappointed to hear this. So, when he comes to the room he has this large black unreadable mark on his forehead. The nurse said “they told us he asked to keep that on his forehead” – What???? Again this morning the new RN asked “Is it true he is a tech geek?” I asked him how heard and he pointed to the black mark on his forehead. I am afraid to wash it off for fear of more pain.

BTW: the surgeon tweeted at 11:45pm that he had been in surgery since 7am and was beat. I retweeted and thanked him for his service.

Day 15 – Surgery Day (by Sherry)

Here we go! They took Darren down to surgery around 2:15, and they finally took him into the surgical room at 5:05pm.

There is a chance his small (2-5mm) piece of brain will be donated for research.

We celebrated Valentines Day a bit early

Darren’s hospital girlfriend hung out with us for awhile

We follow the surgeon on Twitter and so we left a message for him on Darren’s forehead.

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