Our son had school and so I dropped him off and went to Wal-Mart is a few blocks away. I needed to pick up a few things for Darren. I was standing in the Men’s section and it hit me. Everything that had happened these past 20 days. I began to cry right there!

I sucked it up (as my Dad would say) and finished shopping.  I came home and sat down in silence and Thanked God for the staff at KU and for Darren recovery.  Cried again. Then went about my day.

Our son had Parent/Teacher Conference and he is doing well. Despite everything going on at home. Darren has been his Math buddy and so now he thinks he can’t do it without him. So his grade in Math did drop this quarter but it is at a “C” so we are OK with that. We just need to work on it a bit more.

We finally got to see Darren at 6:30 tonight. I took Darren his clothes and toothbrush and stuff. He smiled when we came in. Darren had forgotten we were coming. He said they made him get up at 7am. Then therapies started by 8am. They happened until lunch. He met two other guys and he did therapy with them and he ate all three meals with them. Then we told him about Conferences and he said “I ate all three meals with the same 2 guys.”

“OK” I said. Then his son talked with him. His son left the room to use the bathroom and when he came back, Darren said “Well there he is! What’s up Little Man?” Darren looked at his laptop and looked up at us and said “Well how are you guys? I had a pretty good day, I ate with the same two guys all day.”

I quizzed him on what year it was, and he shooed me away and said he was tired of answering questions. We talked about the Olympics and then he got a really bad headache so the nurse came in and gave him some Tylenol. It did not help. He got really quiet and put his hand on his head. He says his head just hurts on the left side. His swelling is down a lot and when we got there his left eyelid was actually open all the way. As his headache got worse that eyelid began to droop lower than his right.

He treats his laptop like a security blanket. When his headache got worse I offered to put it on the table and he said “No!” and he grabbed it so I wouldn’t take it away.

I gave him a soft kiss and flashed him the sign for “I Love You” he nodded his head. His son said “Sorry your head hurts Daddy. Love you and remember to pray.” (What a sweet kid we have!)

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.

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.

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.

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.

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.