Wednesday, April 23, 2008

Up Late :(

Roxey came to hang out with me at the hospital tonight and was on “bum pat” duty just after Jared left (around 11:30p). Charlie opened his eyes with a wide-eyed glassy blank stare, held his breath, limp body except for a single near lurch and pooped at the same time. He had beads of sweat immediately rather than his usual working up to sweating. This lasted for about a minute then he got a little agitated but calmed with the bum pat. We moved him to the crib to change his diaper and then got him comfortable on his side in case he threw up. Then his left eye started twitching to the left (nystagmus) for a few seconds and then stopped. His body never jerked or stiffened throughout any of these and vital signs remained normal (BP114/67). He had a couple more episodes of left eye twitching and one more episode of blank stare without blinking and then fell into a deep sleep (post-ictal). My impression is that it was an absent seizure. The whole series of events lasted less than 30 min. The doctor was paged and he approved the seizure dose of Ativan to be given but by that time Charlie had stopped so we opted not to give it. He is currently on 3 seizure drugs (although one isn’t being used for seizures) and they were given at 8:00 so I think we will be seeing Dr. Filloux (neurologist) tomorrow for another consult. Charlie has had seizures two other times during this hospitalization- first in the PICU when his brain was so swollen and then second when we had just transitioned to the neurotrauma unit 2 months ago. Both of these first episodes he was jerking and stiffening his body. I guess it’s a good thing we are still in the hospital. If we had been home we probably wouldn’t have been holding him while he was sleeping so calmly.

Morning Update: He slept from 12:00-5:00 and then was irritable due to gas. Dr. Such-Neibar and the resident Dr. Henrie came in to get the details of last night's events and tell me the plan. They will notify the neurologist and draw a blood level to see if his medication is high enough. She will also talk to neurosurgery about Charlie's brain CT from yesterday. It looked the same as before (ventricles are still huge, but not under pressure). Charlie is a little confusing to them because he is improving in certain things-controlling his head a little more, sucking, opeining eyes more- but degressing in other areas-agitation, seizures. Dr. Such-Neibar said that is not normally the way brain injuries go. But when has Charlie ever gone about things normally?

20 comments:

seanteyatroy said...

I haven't been as vocal for the last little bit...just want you to know I check multiple times a day, pray ALL day, and hope you guys will make it home soon. Love you oodles and gobs and even a ton!! (that't from Rosie)

Tammy said...

I am so sorry. Poor Charlie. Good luck with things today and hopefull they will be able to figure out what to do next.

Andrea said...

I'm sorry. I hope that he was able to rest peacefully the rest of the night.

Anonymous said...

Hey there,

Just wanted to let you know we're thinking about you and praying for all of you. You were great on the news, by the way!

Kara M

Anonymous said...

Little stinker. He just wants to stay for a while longer and get another going away party I think!

Just hang in there little CC.

Meghan said...

boo. tell him that is not my favorite trick of his. two steps forward and one back, you know... did he sleep the rest of the night?

Suz said...

2 thumbs down on the seizure! I guess Coop wanted to calm us all down after the cartwheels we did for the binky sucking.

Can blood work be done to see if the seizure meds are at theraputic levels?

Hang in there. I am glad you have the neuro background you do
XOXO

Anonymous said...

Damn! I hope today is better! Still praying......

Anonymous said...

praying for him daily,i think alot about him and my heart goes out to you. stay strong.

anna s

Anonymous said...

I am so sorry to hear that Charlie had some seizure activity last night. My daughter had seizures from birth until age 2 on a regular basis and they are scary, no matter what type they are. My heart goes out to you. I will keep praying for you every day.

Someone who cares in PA

julianne orth said...

I don't know if you remember me, i am kyler orth's mom from bed 23. we came into the PICU the same day you guys did. I always thinkk about your sweet little family and my sister told me she saw you guys on the news and I was so excited. I still wonder about little charlie and how he is doing. Kyler actually just got his feeding tube out 3 wks ago even though we have been home for 8 wks. it was a much longer road to recovery than i anticipated. he is doing really good now though.you can see some pictures of him on our blog if you want justinjuliannefamily.blogspot.com
It is good to see charlie is doing well, good luck with everything, we will continue to pray for him, and your sweet little boy will forever be in my heart!
julianne orth

whitney said...

Coop! Knock of all the silliness! I'm interested in hearing what the neuro doc says. I hope you all get some rest today. Caroline just said "His eyes are so big" and "Ooh, he gets chocolate! So lucky. Mom, can he eat oreos?"

Roxey said...

I'm glad he got some rest, I hope you did too. Keep me posted today. Love and prayers,
Rox

Jeremy said...

I don't know you, and I stumbled upon your blog almost by accident. I have been deeply touched, and just wanted to let you know that Charlie has another fan. Charlie and the rest of you will be in our family prayers from now on.

Soldier on little Coop -- you got lots of people pulling for you.

Kristin said...

Ups and Downs... I've had my share, but only a glimpse compared to what you've been through. When my mom was in the hospital last (only for 1 week) the doctors never really did figure out what was going on. There were lots of theories and they medicated her for everything. Apparently one of them was at least somewhat right because she has improved since then. However, it was so frustrating to have even the doctor's guessing. I hope yours get it figured out soon and he continues to improve. You are all in our prayers daily. It's amazing how we barely know you, but love you already.

Kristin

Jada Rose said...

Angel, I know Rob would disagree, but you should post a link to the KSL story in the right side. You guys did such an amazing job with that! I have watched it 20 times! Hope the next few days shows some relief for Coop! Love you guys!

Anonymous said...

To Charlie,
I watched your story on the news and you touched my heart. Your a very beautiful little guy and you look like a fighter. I want you to know that your sweet little face brought tears to my eyes and I wish that I could take your pain away. I've never met your but know that I'm thinking of you everyday and saying a prayer in your name. Stay strong little guy and Go home soon to your family.


God Bless you and your Family

Anonymous said...

I have a friend that checks your blog daily to see how he is doing, and last night she posted a referral to yours. My heart completely melted for your "Jack Jack." I have a 7 month old, and so far the worst we've had is the flu/sinus infections for 6 weeks. That stress on me was amazing, but I can't even begin to imagine yours. I read your whole story last night, and watched every video, and I just wanted to say thankyou, to you, for your incredible patience, endurance and faith. My testimony has grown so much, to the point that I don't know what to say to strengthen yours other than to say what an awesome blessing it is to have such a strong little boy in your family, and that you are so lucky that you can have him with you forever, not just him, but also Britton. I'm praying for you, and will encourage my whole family (its a big one) to do the same :)

jwood said...

I saw your sweet family on the news and linked over to check out Charlie's blog. I want you to know that we are praying for your family and especially little Charlie.

Anonymous said...

You are amazingly strong people, it is amazing that children are so strong and resilient. Primary Children's Medical Center is the best of the best and the staff is excellent, I pray for you and your son. His story has really touched me, and I can't say that I would be as strong if it were my son.