Happy Valentine's Day :-)

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.

Some Good, Some Bad :-)-:

A busy day for our little man and he is still fighting his very best. I guess we'll go with the bad stuff first today. Charlie had his hearing test and what we thought might be ended up being true. Charlie is deaf. His brain didn't show any response to the stimulus, noise or vibrations. They tested him with sound up to 100 decibels and we got nothing. But that’s O.K.! Whenever we hit a road block like this I am constantly reminded of my plea to the Almighty that I made 2 weeks ago when Charlie's survival was grim, and that is that if the Lord saw fit, please let us keep him one more day. I've made that same request every night since then. I didn't ask for him to be perfectly healed, I just asked that he would be HERE, and by damn my little stud muffin of a boy is still HERE! So yes the bad news sucks but Charlie is still with us and of that I'm very grateful. Good news. The little hair thingy's (that’s the Latin medical term) in his ear that pick up sound waves are still functioning in his left ear so there is a possibility that sometime in the future he might be able to get cochlear implants that could restore some hearing. Second, he had a repeat CT scan and his noodle is in much better shape now that we're draining the fluid for him. Third, he had a ultrasound of his wrist to investigate some swelling that was concerning and they suspected a clot. No clot. Fourth, his storms aren't nearly as bad today as they have been and he seems to respond better to meds and calms down faster. Fifth, he's had some good cries today that have made his old man very very happy. All in all it's been a good day and we are eagerly awaiting even the smallest signs of improvement. The Neuro-trauma Attending Physician (Attending = Big wig in Dr. speak) was in today and was hopeful that Charlie's condition would start some gradual improvement. She also commented on what a wonderful support group Charlie, Angel and I have and that sad but true a lot of patients aren't so lucky to have so many people that care, visit and support them. Charlie, Angel and I are very lucky and we are so very thankful for all of you.

How's this for a good cry?

an account

a few days after charlie was hospitalized, and we knew we were in for the long haul, one of angels friends who has dealt with long term hospitalization suggested opening bank account for charlie. after several more people suggested or asked about the possibility of donating to charlie, i talked with angel and rob about it. honestly, they felt awkward about it, and were very unsure about the whole deal, but didn't really have the energy to think too much about it. from the very beginning i have been concerned (as are they) about the long term costs that will be associated with the care of our special little guy and suggested that there were people who wanted to do something, but felt helpless. i let the idea go for the time being with all that was going on.

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.

Thanks for All of Your Support!!!

Lucky shirt :)

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.

Overall a Good Day :)

Charlie has done well with the new attachment. He came out of anesthesia just fine and was a little agitated afterwards while he was being fitted for his wrist splints. Currently his breathing is labored so his nurse has clamped the drain to limit the amount of fluid that is draining. When he exerts any sort of additional energy such as labored breaths, then the fluid drains too fast and the pressure can go too low. A low intracranial pressure is not as concerning as a high pressure but it can give him quite a headache. He just received Ativan and Morphine to chill him out so they can unclamp the drain.

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

Settling Down

Our little man has had quite a busy day. After surgery he was only in recovery for about 1/2 hour then we got back to the room about 1230. Hoards of Doc's, RN's, Tech's, and Therapists have been swarming Charlie from then till just now. So finally alone I can get a update. His brain is draining like crazy and he is still pretty fired up. Probably because he hasn't been left alone for the last 3 hrs. He got fitted for his wrist splints by the Occupational Therapist and had his eye's checked by the Ophthalmologist. Good news, his eyes look normal w/ no visible retina damage. Not so good news, they still don't know if he can see. They'll have to re-evaluate him when he is more alert and able to participate a little. He had a brief PT session but they only worked his legs because w/ this drain thing has to stay at the same level as his head making it harder to move him around. Hopefully he'll calm down and do a little sleeping and maybe slow the rush of fluid coming out of his dome.

Surgery is Over

Dr. Brockmeyer just talked w/ us and told us everything is ok, no issues and the drain is working. When asked about how much pressure there was in his head he just said, “A lot of pressure... a lot of pressure." He is also pretty confident that Charlie will need a permanent shunt and he might get that as soon as the end of this week. They just have to be 100% sure that the infection is all gone. He'll be in recovery for a bit until the anesthesia wears off then back to his old room. Thank you for all your support and uplifting comments. We are continually amazed at the responses we get from all of you, some we know, some we don't. Thanks.

Keep Your Fingers Crossed

Last night was Charlie’s best sleep night in days. He slept almost 4 hours and early this morning he got his heart rate down to 113 bpm. I don't think it has been that low since we got here. So I think Coop knows he has a big day today and is trying his best to be ready for it. The plan is to take him to the OR (PICU is still in a State Penn. status, overcrowded) between 0930 and 1030. From there he'll be in recovery while the sedation wears off and his vitals stabilize, then they'll bring him back to his room w/ a drinking straw stuck in his head. Ang and I are nervous but "cautiously optimistic" that this will help his brain heal. Dr. Brockmeyer the neuro-surgeon talked w/ us this morning and told us that in kids like Charlie they ultimately need a permanent shunt placed to drain the CSF into his abdomen. They won't place that right now because they are concerned about a continuing risk of infection.

I Spoke Too Soon :(

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.

No News is Good News :)

Char is sleeping and the world is happy. He just got back from a little Ultra Sound and CT roady. The Ultra Sound was to look at the fluid collection on his back that they found during his last MRI and the CT was a precautionary move to make sure that his fevers are from the Storms and not a new infection. We're pretty sure the're from the storms because they spike concurrently. (Erin sorry if I lost you, con·cur·rent [kuhn-kur-uhnt]–adjective 1. occurring or existing simultaneously or side by side) As far as results, because it is so late in the day we won't get any of the results until tomorrow so no news is good news tonight. Today Charlie has had a little trouble keeping is O2 above 90% so Dr. Lamb (Charlie's new Attending) has ordered a thorough nasal sucking q4 that i'm sure Charlie is so excited about we'll have trouble keeping his trousers on. W/ new doses of meds tonight has moved, much like Char's bowels, smoothly and he's limp for the first time in two weeks. No arched back and legs will stay bent, however his wrists and ankles are still reaaaaallllllllyyyyyy tight. No hearing or eye test today but hopefully tomorrow. I don't know about you but I like posting when Coop is peaceful, it inspires a far more jocular post. (sorry Erin)

The Green Power Ranger vs Air Med

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"

BoTox Anyone?

Last night was just a continuation of how he was yesterday. Heart rate in the 170-180's. He had one episode of his BP and temp elevating. They tried the ativan and morphine and they didn't seem to help much. Tylenol brought his fever down. I feel like he needs to get more sleep so his little brain will be able to heal but maybe I'm wrong.

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...

Night Shift :l

Rob finally gave in and left the hospital. For the first time in two weeks he will be sleeping at home. I'm on night shift so I hope Charlie settles down and does some great sleeping. Rob and I have been a little confused about what characterizes a "storm" since anytime Charlie is awake he has increased heart rate, labored breathing, and is repetitively moving his arms up and down. The Dr. said that she does not consider it a storm until the heart rate goes to the 180's, the temp is increased and his BP goes up. Under this new classification he has only had two "storms" today. So this must just be how he is when he is not sleeping. Currently his HR is 168 and he sounds like he has the hiccups through his belly breathing. They gave the first dose of the beta-blocker (Labetalol) but it was a really low dose and doesn't seem to be doing much yet. For those of you that are interested in the specifics I have asked for a list of what he is currently taking because the list seems to get bigger daily.

Scheduled Meds
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)
mortin (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)

The Sabbath :(

This afternoon was great for Rob and Angel. We got to see Britty for the first time in a week. It was awesome and I think that we both missed him way more than we thought we would. But for Charlie it hasn't been such a hot day. He continues to struggle w/ a heart rate that is way too high, 190's and you'd think that after 4 or 5 hours he'd exhaust himself and fall asleep but nope. We figure he's slept about 3 hours in the last 24 and the meds aren't calming him down like they used to. The Doc's are going to take the beta-blocker route to try and lower his heart rate so we're hopeful that they will help. Right now he's pretty worked up and sweating like a pig. (Actually the hog Doc informed me that if a pig sweats it will die, what M.D. knows that kind of stuff?) He's running some pretty good temps today also and I can't imagine that this is good for a nogg'in that has already been cooked. We're praying for cooler temps and sleep for our poor boy. I told Charlie that we need some good news for the blog and he stared off into the distance which I interpreted as "I'll see what I can do old man."

View From The Waiting Room

Sunday Morn :l

Well it's more of the same. Right now he is sleeping peacefully but he had a busy night. Rob is learning what it means to be your childs advocate. He has been staying the night in Charlie's room watching the monitors and encouraging the nurses to give medication after 2-3 hours of storming. The philosophy of medicating is a not as proactive as in the PICU:( Coop only slept about 2 hours last night and the rest of the time he was "storming". The storming now consists of fast labored breathing, heartrate between 160-197, arms constantly moving up and down like bicep curls, legs locked and pointed and left eye open but not looking at anything. The doctors are going to discuss a different approach today. He started to rub his tummy raw from the constant arm movements during the night so we have put a gown on him. Hopefully we can come up with something that will work for him.

Saturday

Today was a pretty active day for our little buddy. He has been awake for most of the day and when he is awake he tends to storm more frequently. They are not as severe as they have been in days past but definitely more often. Charlie's Dad is starting to wonder if this isn't just his routine while awake. The posturing and breathing is still as rough as before but today he seems to be looking around a little more. Still not focusing on things and his pupils are still kinda slow. Right now his BP is in the 150's and we're all happy w/ that because it's staying there while he's awake. Yeah! Normal for a baby his age is 120-130 bpm.
Big thanks to the Ward over at the new house for sustaining the fellas working over there today. Thanks also to the fellas for working so hard, Angel and I are continually amazed and Steve, Jared sent me a picture of the fireplace and I have to admit that I was a little turned on.

FYI

I realized that we never said where Charlies new room is. Duh! He's in the Neuroscience Trauma Unit, 2nd floor, pod C, Rm 2018. There, now you can find us.

Relaxing morning :)

Rob went to the hotel to get some sleep after staying the night with Coop. The little man has had a relatively calm morning since I've been here possibly due to the extra Ativan. The nurse checks in periodically and the weekend attending Dr (Dr.Glasgow) also came in to assess him. She said that we have a lot of things to work on. First, we need to get these storms under control, so she is increasing the Baclofen to relax his muscles a little more. Then we will be able to focus on rehab including physical therapy, occupational therapy, hearing testing, and eye sight testing (probably on Monday). When the Dr. came in and checked him over he did open his left eye and gazed in her direction, however, it still doesn't look like he is focusing. At the care conference they estimated we would be here for 2-4 more weeks, but we all know that time frame is up to Charlie.

I hear Britt is having a great time in Disneyland. So far his favorite ride is Pirates of the Caribbean. I can’t wait for him to come home tonight so I can hear all about "the happiest place on earth". Now that we have moved out of the
PICU Britt will be able to see “Jack Jack”. The hospital has a program where they talk to siblings about the tubes and machines that little Charlie is on so Britton won’t be frightened. I think it has been tough on Britt to not be allowed to see his little buddy for two weeks. We will probably bring him in after pre-school on Monday.

PS-Meggie-Thanks for the baby legs. I know Charlie loves them!
(posted by angel)

Charlie's World :-(

Our little man was a naughty boy last night. He once again wanted to show all the Dr's who said that his "Storms" would get better that this is Charlie's world and they just get to live in it. He started into one about midnight and it turned into a whopper that lasted until 0230. They gave him all the usuals but it was the IV ativan that finally did the trick. The Rn's and Residents thought Charlie was pretty cool because they had never seen a thalamic storm, only heard about them in class. He had an encore from 5 to 6 but not as bad and he mellowed on his own.
The Neuro-Trauma unit is a different world from the PICU but I think we'll like it. It's like moving from New York to DeBeque. The biggest thing is that it's quiet here and there is a window.
Huge thanks to Aimee, Fred and the crew of Café' Molise for the night out! Why have we not eaten there before? It was absolutely fantastic and Angel finally found bread pudding that is better than her mom's. You guys are great.
We also got over to see the Herculean effort going on at the new house. I can't wait to move in. If you haven't been to see all the hard/charitable work that has gone on there you need to make a trip. All of it is so much more impressive than this part-time carpenter could have ever done. Thanks to all of you.

Friday night...........

Well, Grandma Kathi and Auntie Susie are holding down the fort tonight. Angel and Rob have kept quite a vigil at this hospital. We peeled them out of here for a few hours and they headed to Fred and Aimee's resturant. This was a MUCH needed 'out' so a great big thanks for the generosity of Cafe' Molise.
Charlie has had a pretty good day. He is having more frequent storms but they are less severe. Charlie has graduated from the PICU (YEA and not so YEA) and he is now in the neuro trauma unit which is right next to the PICU. He has is own room and so his guests are very comfortable. There are lots of new doctors and nurses to get to know. Auntie Susie thinks he looks a BILLION times better than he did a week ago. Grandma Kathie said he is less rigid and much calmer than he has been. YAHOO! Hopefully we are on the path for a good night! Keep those prayers coming!

SUUUEEEEEE!

His last storm is under control. Only and hour and 15 min. Now that we are getting a better grasp of what his patterns are they are getting more comfortable w/ the idea of moving him to the Neuro-trauma unit but Charlie isn't happy w/ the idea so he has relaxed himself to the point that his blood pressure is going in the tank. So, while they try to regulate that we'll hang tight for a bit. Yesterday when they wanted to move him he started screwing w/ his oxygen sats. I think he likes it here and doesn't want to leave because he has a crush on his Resident. Char has developed a certain affinity for a Hog farmer turned M.D.. Shannon Cox (pictured above) from DeBeque Colorado has swooned our little boy. Who doesn't think that girls from towns of 114 where your mom is also your aunt isn't hot. I see a movie for the Lifetime network coming soon, "Greased pig country bumpkin has given up the overalls for a white coat and stethoscope." In reality she has been great and we know she'll have a great career ahead of her. Shannon thanks for all of your help and making us feel comfortable at our new home away from home. Is your husband jealous that Charlie has the hots for yah? Don't let your pigs sweat and say hello to your dad/cousin for us.
P.S. Bronco's Suck!

Ups and Downs

Apparently we are not to the point where we can have two good nights in a row. Charlie had 3 storms last night and now with all the docs up in his bizness for morning rounds he is whipped into another one. This one is pretty long so Charlie is slowly getting the full cocktail of drugs to knock him out of it. I took a chunk video of one of his little storms and as soon as I figure out how to upload it i'll put it on the blog. It's so sad to see him work so hard. Other than that no changes, still no improvement, YUCK.
Ps. meggie if you want a little more Wildcat pride the Chill-weed put "The Den" video on youtube.