Saturday, February 16, 2008
If anyone wants to check back at 1:00 AM I'll still be waiting
Friday, February 15, 2008
Seizures suck. Over a week has passed and we thought that Charlie was done w/ this seizure nonsense. Well, he's fooled everyone again and went ahead w/ 3 separate seizures tonight, 2 of which were after IV Ativan was administered to halt the 1st. This is all very disconcerting if you'll understand that he is already on 2 drugs given prophylacticly with the aim of smacking the brain squarely in the face before it even thinks about misfiring. The 1st one lasted 10 min, 2nd maybe 5-10 min. but don’t know for sure because we were feeding our faces and we heard his ankle casts clicking together, 3rd lasted 25 min. and cleared on it’s own. All 3 occurred in about a 90 min. span. The good thing is that he is now post ictal and will hopefully rest for a time. He was having a pretty tough evening tonight and seemed to turn his backside toward every drug given to help him mellow. The confusing thing is that throughout the episodes his vitals stayed steady so there is no real way to tell from the monitor what is going on so Rob gets to maintain a bedside vigil to watch for a repeat performance. I knew that pulling fire guard in the army (Staying up all night to watch for fires in a solid concrete building that can’t start on fire.) would come in handy. There really is military intelligence.
Ummmmm... probably not but, and this is a very big (like J-low) but, you might just see him wear ute gear to a tailgate on the hill by his own cognizance. We just had a pretty impressive visit from a great group of guys from the University of Utah Football Team. Paul Kruger 11, John Peel 3, Zeke Wiley 99 and Greg Newman 56. They came by to see our little Charlie and brought him a bag full of loot, not the least of which was a football signed by the team. Honestly it was great and what a down to earth bunch of guys. We talked about everything from last season to them looking forward to playing Michigan this year and my plea that they please be nice to Max Hall this year. We joked about the rivalry and some of the more comical events of last season. What a neat experience it was and it made Angel just a little giddy. I never thought I would say this but thank you guys and … a… “Go Utes!”
They are going to increase his baclofen to see if that will help with his aggitation as well as increase the colonodine. They took him off the beta-bloker because his blood pressure is under control. He is currently being fitted for his moonboot casts. We'll update with a photo when we get one...
editors note (meghan) - rob and angel lost their internet, so they'll post again as soon as it is back up and running...
His night was pretty rough again. He started a big storm at about 10:30 and his HR slowly increased to 198 over the course of 2 1/2 hours. The nurse ended up paging the resident to give his Clonadine 45 minutes early (@11:15). They turned off his drain for the allowable 30 minutes because he had dumped 30 cc/h20 in one hour. He was still agitated so they gave IV morphine. He calmed down a little around 1:00 but it didn't last very long.
Thursday, February 14, 2008
Happy Valentine's from PCMC!
I guess that means I have to leave the hospital and get something for my super smok’in hot wife today. I'm sure that she can't wait for a Harlequin Romance type dinner downstairs at the Rainbow Cafe tonight; after all she is married to the smoothest guy in Davis County. She's so lucky. We've added a "Are we storming" deal to the top of the blog for those interested in Charlie's current condition. It will give you a general idea of where he's at and one of us will try and update it as often as occasion permits or whenever we're bored. The number is his heart rate and that is the best indication that a thalamic storm is coming on, we're told that normal for a baby Charlie's age/weight is around 120 Bpm. Charlie's night was well below average w/ little or no sleeping. He had one of his worst storms in days, it lasted about 4 hours and his heart rate broke the 2 hundy mark. Boo. Medication/Exhaustion kicked in about 0600 and he fell asleep but that only lasted until morning rounds started at 0700 and all those concerned w/ Char's condition began their work. Dr. Terry (Jolene's neighbor) is increasingly troubled by our little buddies’ ankles so today he gets his Botox and casts, should be fun and w/ Charlie’s recent proclivity to agitation I’m sure he won't mind at all. Word from the Infectious Disease folks is that they want to keep him on his biotics for 2 more weeks which triggers word from Neuro-Surgery that they won't internalize his shunt until that therapy is complete. So word from Angel and I is that we'll be here for at least 2 1/2 more weeks. Now you have all the words.
Wednesday, February 13, 2008
Yesterday, I got a call from a sweet, sweet, proactive friend of angel & robs, who told me she had opened an account for Charlie. so, for those who would like to donate to help with charlie's medical and long term costs, you can donate at any Utah First Credit Union. The account is in his name - Charlie Cooper Christensen. any money that isn't needed for charlie will be donated to Primary Children's Medical Center.
Again, we can't say it enough... we love you all and are constantly amazed by your show of love and support.
-Meghan - Charlie's aunt.
Last night was pretty uneventful. He fell asleep after his midnight dose of clonadine and ativan. They are monitoring the drain to see what pressure they will put the shunt when that time comes. He goes to CT this morning and will probably get his hearing test today. We are going to increase how much time he has his wrist splints on because he his still posturing his arms. So far the Cerebral spinal fluid that they sampled in the OR has not grown any organism. I'll post more later when I get the results.
Tuesday, February 12, 2008
Good News: The drain must be relieving some pressure because we heard a cry for the first time in 16 days. I never thought I would want to hear my boy cry but it totally made my day. The cry was more of a facial grimace and then a groan. I will try to figure out the video capabilities so you can see it. I hope it’s a good sign that he is becoming a little more aware. He will have a repeat CT scan in the morning to evaluate the progress
Monday, February 11, 2008
Turns out that Charlie did have some news and I'm not sure how to feel about it just yet. The results from his CT scan came back and showed a significant increase of fluid build up in his head. One of the folk from Neuro-Surgery came in and gave us the news. So in the morning he'll head back to the PICU and have a drain placed in the soft spot on his head. Hopefully this will help improve his condition. We're not sure how long the drain will be in but there is a possibility that if Charlie has scar tissue or protein build up issues he will get one permanently that drains through a tube under his skin down to his abdomen. The reason we are told that this is necessary is that something is blocking the natural drainage or flow of the CSF, (Cerebral Spinal Fluid) and is causing it to pool. Maybe scar tissue, maybe inflammation, or maybe damage done from previous swelling but for now we don't know. I'm hopeful that this will be a good thing and help Charlie make a move in the right direction and get him out of the stagnant pond of thalamic storms. I know how tired I am of watching him work his guts out just to breathe; I can't imagine how he is suffering. Pray hard tonight.
If any of you have been around Britton in the last 9 months, you know that he is always pretending he is the greeen power ranger. While on the cruise, grandpa found a power ranger cape for all the kids in Mexico (There are no power rangers in Disneyland but Mexico? Disney even created them. go figure...) Britt wore his cape to the hospital to see "Char" for the first time. He was unphased by all of the tubes and machines and just said Charlie was sleeping. The real excitement of the day was when Shani offered to take him to see the Air Med helicopters on the roof. He met the pilot, watched one land and refuel, sat in the cockpit and even recieved a toy AirMed helicopter that he had to make land on every stair on the way back. Thanks for your patience. He loved it. "Watch out dragons, I'm in Fight Mode"
Dr Such-Niber (Rehab) came in this morning to assess him. She said his joints are more stiff than last Thursday and she is nervous about contracture. She is going to have physical therapy fit him with some splints/casts for his ankles and wrists and also increase his tranxene today and Baclofen tomorrow. Hopefully this will help him relax a little more. If the stiffness continues then they will inject BoTox into some of the tightest muscles to paralyze them for a couple months while we work on the opposing muscles. Maybe they can use the extra to erase the worry lines that are forming on my face...
Sunday, February 10, 2008
Labetalol 13 mg BID (control blood pressure)
NaCl q 4h (sodium chloride)
methadone 1 mg q12 (agitation/pain)
tranxene .94 mg q 8hr (slow the nervous system/seizures)
Clonidine .06mg q6 (control blood pressure)
Baclofen 1.5 mg BID (muscle relaxer)
Zantac 20 mg BID (stomach irritation)
Keppra 130mg BID (seizure)
phenobarbitol 30mg BID (seizure)
Claforan 800 mg q8 (antibiotic)
PRN- if needed
Lorazepam (ativan) 1 mg q4 (increased HR)
morphine .9 mg q2 (increased HR)
tylenol 135mg q4 (fever)
IV Ativan (seizure >3 min)
Quite a list for a 9 month old baby who only weighs 20lbs (He has gained 1 lb since we have been here)