Today was Good :-)

Charlie had his first full PT (Physical Therapy) session today and it went splendidly. They worked him over for about an hour and he was able to handle everything that they wanted to try. I was certain that all of the stimulation was going to put him over the edge but he proved me wrong. His heart rate got up to the 180's but it was a far cry from the 220's. Later this afternoon he had another storm but not as severe as before and it only lasted about 30 min. He's sleeping now and were hoping that he'll stay that way for a while. Today they also got all of his meds except morphine and antibiotics figured out so they can give them to him by mouth or by tube in Charlie’s case. The biotics and narcs still have to be given via IV. His "tone" has improved today and he's not nearly as stiff as he has been but this is largely in part to the new meds. Ya'll are great and thanks for the words of encouragement. We needed it.

Your Prayers Worked :-)

Now Charlie did have a good night but I'd like to know who of you out there prayed that they would keep him loaded/snowed, because it worked? We were very fortunate to have a super RN (Sue) last night and was very proactive in medicating the storm at the earliest signs so that he wouldn't get so wound up. This morning has been pretty mellow, he had one "Mini" storm but it only lasted about 20 min. Angel and I had our 1st "Care Conference" w/ the PICU staff. We had kind of prepared ourselves to hear the absolute worst case information. My dear sweet bride in true Wife/Mom list making fashion had a litany of questions that would make a Mensa cringe and for the first time I was grateful for it. Generally I abhor anything that even looks like a list because the way I see it a list from the wife isn't a group of things that could be accomplished it's merely a plethora of ways that you can fail to meet expectations because you didn't do it in the order/way that you should have. BUT... in this case her list of questions had the Doc's spewing way more info and answers than we thought we'd get. Here's the nitty gritty. GOOD: 1. His survival rate at this point is very high. 2. They also expect these storms to subside w/ time. 3. His brain stem appears, from his last MRI, to be in good shape. 4. No recent seizures. 5. His brain is only 9 mo. old and still has some maturing to do. 6. Lastly he's not nearly as rigid and the Rx's seem to be managing things. BAD: 1. He's had his egg scrambled pretty good and he isn't improving neurologically and isn't alert. That is the Neurologist's biggest concern. 2. His healthy brain stem doesn't match his clinical picture. 3. His breathing is still pretty labored and no real cough or gag reflex and a tracheotomy is still on the table. 4. From his MRI it is most likely that his damage is in the areas of the brain that control motor functions, cognition, speech and the overall communication of both sides of the brain. 5. A "G" tube so that he can feed himself is in his near future. 6. Wheelchairs, walkers and Mini-vans are all strong possibilities. 7. He will be at increased risk for pneumonia and respiratory infections for the rest of his life. 8. There is a high likelihood that while he'll be able to understand things he won't be able to interact or express himself. 9. "We just don't know" and "Time will tell"
We will continue to hope and pray and we urge you to do the same. Any of you that have come to see Charlie know how hard he is fighting and that he's not going to give up and I'll be damned if I will.

In Case Your Wondering About Britty!

Before Charlie got sick we had a cruise planned down in Mexico w/ the In-laws. (Because who doesn't love to vacation w/ the Barlow’s?) Angel and I were really unsure if we should let Britton go or not but in the end the fact that he's currently floating in the Pacific lets you know what we decided. I think it was the right choice because now Angel and I can devote all our time to Charlie and don't have to worry about what relative is pistol whipping the Green Ranger. (Just kidding meggie! http://mtwebb.blogspot.com/2008/01/sir-please-put-gun-down.html) So while Britty, Max and B-Low play pirate we are consigned to cruising vicariously through Annabelle's daily phone calls. Last night they had a Pirate dinner and any of you that know Brit can imagine that he was in heaven. Arrggghh. We miss him a bunch but know that he's having a great time.

Sweet Dreams Char :-)

Lets all keep our fingers crossed that Charlie will stay calm tonight. He has been a little better since his last "Storm" but whether or not that's due to drugs or exhaustion we don't know. They've increased a couple of meds to try and alleviate the longer storms like he had this afternoon. I wonder how much longer they can continue to go w/ the "Increase his dose" therapy. Lets all hope Charlie sleeps tonight, he's had a long day. I think his only good part of the day was being held by his mommy and grandmas.

Rough Afternoon :-(

We're not really having a ton of fun in the PICU today. Charlie was doing ok to start out the day and even let Angel and Grandma Cheryl hold for a while until he whipped himself into one of his fits. These are the fits that they are referring to as a "Thalamic Storm" are his little noodle unable to control the firing of neurons that originate in his thalamus. The firing is due to pain, fever, agitation, stimulation or being a stubborn Scandinavian and once the firing starts he isn't able to control it and it starts a chain reaction that we've only been able to control w/ meds. His last one lasted over an hour and a half and it isn't very fun to watch. Right now he's had tylenol, motrin, clonadine, methadone, 2 doses of ativan and morphine. So it goes w/o saying that he's pretty snowed. We hope it lasts for awhile. We are still very concerned that his neurological symptoms aren't improving so we are praying for his thalamus to chill out and give my little fighter a break. How long can my little buddies ticker hang out at 220 bpm?

Wednesday Morning

We are still in the PICU because Charlie continues to have what they are now calling thalamic storms and they want to get those under control before moving him to another unit. They have increased the Baclofen and his hands and feet are a little more loose than before. He has been calm all morning and I held him for a couple hours. He still is not opening his eyes much or doing purposeful movements. Physical therapy came by and assessed him. They gave us some exercises to do so his joints don't become too tight. Dr. Ampollo(Infectious Disease) came by and said they could take out his ART line to decrease the chance of infection. So now he is down to only one IV and a feeding tube. I am mostly curious about what the neurologist has to say. So far only the neurology medical student has come by.

Checking off the list :)

Our nurse today is all about action. She is in the picture below with Rob. Today she has sucessfully tapered off the Fentanyl, Sodium and presidex. She was the first one to mention that it was even possible for us to hold Charlie and then made it happen even though it was a mess of wires to put him back in the bed. I know holding him had a lot to do with having him extubated too. She has just removed his PIC line in his right arm. She also called 3 times yesterday to get everything scheduled for physical therapy/occupational therapy. We are checking things off the list left and right. We are now down to only 2 pumps on the pole where we had 8 only two days ago.

Tues Evening :-/

Charlie is continuing to cruise along. No worse for now. Today Charlie's Dad got his much needed therapy and was able to hold him for about an hour. It was awesome. The PICU is still tinkering w/ his meds and trying to titrate to a level that suits him. His posturing is still pretty bad and today he got a visit from the Rehab staff that will help him from here on out. They are some very nice folks and told us that while they are very concerned about his posturing, arched back clinched jaw they said that Charlie’s stiffness and posturing isn't the worst they've seen... "What?"... finally something w/ this disease that isn't the worst a Dr. has seen. What a blessing. He is a bit calmer today than he has been in days past but that is largely in part to the new and increased drugs he's getting. He is off his Fentanyl and Sodium and he should be weaned off his Presidex in an hour or so. They started him on Baclofen that is a muscle relaxer and that seems to help a little more w/ his posturing. He still goes through is agitation fits and then will sleep for a while. His breathing is really hard and all through is nose. They think that his "Neurological Insult" is causing his diaphragm not to cooperate and so he has to compensate by doing some pretty heavy belly breathing. The Dr.'s that weren't familiar w/ his case thought he should be re-intibated. He has been coughing a little more, yeah, and even yawning. If he is able to stay off the PICU delivered meds tonight it looks like we might move next door tomorrow to the Neuro-Trauma Unit where all the kids w/ uncooperative brains go. Should be interesting. The care in the PICU has been exceptional and we'll miss it.
Sorry for the lack of updates today but I just feel like we keep giving the same info over and over again and I don't want to bore. Thank you all for everything.
-Rob

Tues Morning :l

Charlie got very aggitated last night and it took well over an hour to calm him down. He gets so mad that his heartrate and BP shoot up, his posturing gets worse to the point where he arches his back and tenses up his arms and legs. This sounds like a seizure but they did a second EEG a couple days ago and found it is just the posturing. When he gets this mad his breathing gets very labored and looks like he can't get enough breath. It makes people very nervous when they first see it but he keeps his oxygen saturations within normal ranges so they usually just let him ride it out. Because he didn't calm down very quickly last night they ended up giving him a full dose of Ativan and now they have perscribed it for regular doses. The new infectious disease Dr and Neurologist came by and said they don't have anything new to add or advise. The decisions are now mostly coming from the Intensive Care Dr. We have several more steps to make before moving out of ICU. (He has to stop taking Fentanyl (pain), Presidex(sedation), Sodium. Currently they are slowly switching Presidex for Klonadine and weening the sodium and fentanyl down.) But we are slowly working towards it. He still doesn't have a gag reflex but he did cough a couple times yesterday which indicates he may be able to clear muccous from his airway.

View From The Waiting Room

Angel's Best Day :-)

Angel is in heaven, she got to hold Charlie for the first time today. I think it was something that both Mother and Son needed. Charlie met w/ his first Occupational Therapist today and got a little work out while they played w/ him. He'll meet his first Physical Therapist tomorrow and they will try their hardest to loosen him up a bit, that should be interesting. Other than that no real changes, he's kinda coasting along right now and he doesn't seem to get nearly as agitated as he did w/ his tube in.
On a different note Charlie got a great surprise sent to him today. He got a package from the BYU Football Department and the get well wishes of Coach Bronco Mendenhall. It had 4 hats, a ton of t-shirts, Cosmo's video and a couple of magazines. In retrospect this package may have been more for his dad but regardless I owe a big thanks to the BYU Football program and I promise to renew my season tickets. "Rise and shout the Cougars are out!"

So far So good :)

Extubation was a success so far. It was quick and hopefully painless. He had recieved morphine a while prior to keep him calm. His oxygen saturations are staying up in the 90's so there is no need for additional oxygen. There is a question of whether he will be able to clear his own muccous or not because of the part of the brain that is damaged. Charlie is the calmest he has been all day -low heartrate, low BP. So far the mucous hasn't been an issue and he's been breathing on his own for about 60 minutes!!! He does seem less aggitated but I don't know if that is related to the extra sedation or not. We are still waiting for physical therapy to come by and fit him with balls for him to grab so his hands don't clamp down so hard and boots to make his feet flex.

Monday Morning :-{

We reached out one week mark last night and Charlie decided to celebrate by having another seizure. Yuck. We had a new rotation of doc's come by this morning so we are begining the process of making new friends. The biggest concern is that from a neurological stand point he's not improving and seems to be stiffer w/ his posturing. They are going to try and extubate him today so we are holding our breath hoping that Charlie wont. The concern is that he doesn't protect his airway on his own. His gag reflex isn't the greatest but he has done well when they test his ability to breath on his own while still on the vent. They have also told us that if he fails his extubation it is not uncommon to have to be re-intubated. We're praying for no more seizures and less posturing and stiffness. Thanks again for all your support.

Hola from the Barracks :-)

I want to say thanks again for all the support and comments from everyone. We have both been so humbled. Tonight Angel and I had a chance to get out of the hospital for a bit and the first place we went was to the new house. Jared was there and I don't think he has slept in 5 days. Looking at him I see where the phrase death warmed over came from. We all looked through the house and were blown away. In the words of Kathi Barlow, "it's beyond-beyond" and while I don't know what that means exactly, I think its really good. In every room we went in I almost lost it, but I didn't because the first rule of brotherhood is you can't let the little brother see you cry. We could feel the love there and for the first time in the whole construction process it felt like home. Thank you all sooooo much for that. The hardwood floor is beautiful and the handrail is 100 times better than I could have ever made it and Doug and Jared the tile is stupid good, and John I told you to buy that Dap stock and I bet you wished that you did after seening all the caulking. I also am taking a certain satisfaction in knowing that my house is causing the davis county power grid to wane, so Wayne thank you. And I know that Jared didn't get all that stuff put in the garage himself so Biff, I owe you one. I owe all of you one. One final note about the house: I was made aware of a certain act of vandalism at my home so I am calling all Cougar fans to assist me in another work party when Charlie is out of the Hosp. in order to redo a small portion of the floor. Bradley Jay Short is public enemy number 1. Shortdog, no good deed goes unpunished, 17-10.
Charlie is doing ok tonight. It's like he'll rest for a bit and then go through is agitation routine, more posturing, for a bit. While Cheryl Dee and I were watching him tonight we noticed a small amout of blood on his drool cloth and they found that his jaw was so tight he was smashing his tounge but not that bad. The cliched jaw is another sign of posturing and the excessive drooling is not unusual at all, just a sign that both my boys might be a not too distant relative of Joel (dribbleboy) Taylor M.D. Luv ya Leoj. Charlie's fevers continue to come and go but usually associated w/ agitation. They are doing their best to try and limit the amount of stimulus Charlie gets so they've very politely asked us not to touch or disturb him for awhile. They also gave him some ear-plugs to try and cut down on the noise. Hopefully he can still hear! They also put in a small oral airway tube to try and keep his jaw open but he just pushes it out and our nurse Tina just puts it back in and in her cute South African accent tells him, "Now Charles some things here are not negotiable and this is a fireable offense." she's fun.
Now that we have moved from the suite down the hall to the ghetto it hasn't been all bad. They are so crowded they have had to put 3 kids in the space made for 2 all over the unit. The Charge RN said this is the most crowded she's seen the PICU in 14 yrs. Apparently Utah is having a super bad RSV season and I blame nursery at church, those rooms are like a petri dish. We've made friends w/ our neighbors and packed into our little corner. I guess this is what a prisoner feels like after moving into the general population. On the bright side being moved must be a small sign that Charlie isn't as critical and no longer needs the isolation room. I just feel terrible for the baby and family that moved into Charlie's old room and pray she's able to win her war.

Transition :-<

Nothing new to report today. We have just been trying to keep him relaxed so his HR stays down. There is a new admit that needs our spacious isolation room that we have become so comfortable in. We are now moved down the hall to unlucky 13 which is really just a space in a big room. Another transition we will be adjusting to is the change in staff. The doctors we have become so attached to will be going off service today so we will need to get to know others starting tomorrow. It's hard when you have gone through so much with one doctor to adjust but we will.

Sunday mid-morn :l

Good news= the spinal tap culture did not grow any organism. No new seizures. His pupils are about the right size for the amount of light in the room and they are closer to being equal than previously.

Bad news=Charlie is posturing more than usual. His respirations are faster than they would like to see and he did a funny breathing thing yesterday that His fever is still fluxuating. Both the Dr. Filloux and Dr. Osguthrope said they would have liked to see more alertness and less posturing by this time but he was a very sick boy. He probably won't be extubated until he has less posturing even though he is triggering most of the breathing. Now we just have to wait for little Coop to tell us when he is ready for the tube to come out. Every day we will readdress this question.

Sunday Morning :)

Well things are pretty uneventful here. Little Charlie was peaceful most of the night. He still gets aggitated every two hours when the nurses do their assessments and it is taking him a little longer to calm down after those. His BP and heartrate were an issue earlier in the night due to aggitation. He is taking faster breaths than the vent and due to that his CO2 is decreasing to 25-30. The Drs would like to keep it at 35-45. So they disconnected the ventilator to see if the respirations would slow down if he did all of it by himself. The CO2 was still low so they gave him a little morphine to calm it down. The seizure medicine seems to be keeping them under control and he hasn't had any more norepi for his heartrate. Yea!

It's fast Sunday

I just listened to a 2 and a half minute message from Chad Stapley reminding me that tomorrow is Fast Sunday and we sure have a special reason to fast. He suggested that I add a reminder to Coopers blog since this is a Fast Sunday we don't want to forget!

Saturday Evening

I am so excited right now to tell you that there is no new news! Charlie has slept all afternoon and has been really pretty calm. Actually the most exciting thing here is that there was a water leak or something here at the hospital and they have had to shut down the cafeteria. Luckly we have had some very generous visitors today and are well fed. We have even been feeding some of our new waiting room friends. This poor hospital is packed. Here in the PICU they have 32 beds and currently 39 patients w/ more on the way. The rumbling is that if Charlie tolerates breathing on his own tomorrow and is doing ok they might move him to another floor so they can free up some space. Not sure how I feel about that just yet. - Rob

Thank You Dr. Russ ;-)

While having lunch in the waiting room Dr. Russ Osguthorpe came in and found us. Generally its a bad thing when the Doc comes to find you. We were nervous until we stepped out of the room and he turned around w/ a little smile. We like smiling Dr's. The results of his lumbar puncture came back and it appears Charlie has beaten the bug! His new gram stain showed no more bacteria. Not even the left overs of dead ones which is what you'd expect to see. His white cell count was in the 400's and normal is about 10 but w/ a baby as sick as Charlie they were expecting it to be in the thousands. Lower white counts equate less inflamation. Lastly his glucose count that was so low they couldn't measure it in his first stain is now 38, normal is about 50. This is so very important because glucose is the food of the brain.

britton watched mom & dad talk to the dr.

He is still running high temps (104 last they checked) but they are expected until the inflamation goes down. They have added a new Rx called Keppra that hopefully will keep any further seizures at bay. I saw one of his seizures this morning and it nearly killed me. Besides all the twitching he gets this really sad face and his bottom lip starts to quiver and he looks like he's crying. Tears soon come and then dad looses it. One of the hardest things I've had to see here. After his 3rd seizure today he had another EEG but it didn't show any further activity or what they call sub-clinical seizures.
The news from Dr. Russ allowed us to take a sigh of relief but now I'm having to remind myself that we still have a very sick boy (still Critical) on our hands. So much damage has been done to his little thinker we just hope it doesn't get any worse. We are still praying for a miracle.

rob, going crazy from the sitting around??

snuggling with mom in the waiting room watching power rangers.

Saturday mid morning

Grandma Kathi just called and Charlie is having another seizure. He is being started on another seizure drug right now since he is seizing through the phenobarbitol. His liver enzymes are still up so the the antiboitics will be changed to one that is metabolized through the urine. The CRP is down to 7.1 from 9 that is a step in the right direction. No more blood transfusions on the docket today. He may be extubated tomorrow because he is requiring minimal support and is over breathing the vent. The doctors think the tube may be adding to his aggitation. Some good news and some bad news but he is still fighting and that is all we can ask!

Friday night highlights

STRONG WORK TROY! The You Tube video is PRICELESS!



here is a little slideshow of just some of the still pictures we took.

Saturday morning..........

Little Charlie Cooper had a pretty rough night! He had a 4 minute seizure around 2:30 and another one around 4 (I think......... but maybe 6). The second seizure lasted about 2 minutes since the nurse was armed with ativan in her pocket. His blood pressure was pretty saggy during the night so there was a fair amount of titration of the norepi. He also spiked a fever of 103 but some tylenol seems to have knocked that down a notch. The machine that runs the CRP blood test is not working so that result is not back yet today. Hopefully that will be MUCH lower today. Cooper seems to have a good day followed by a bad day so we are going to count on a good day today.

Thank you, Thank you

Wow is about all I can say. The saying" ask and ye shall recieve" was shown tonight. On monday on the way to the hospital I knew I would need to take over and finish this house. I was talking to Meghan and we decided to ask for some help, which I figured would be a few cousins and my uncles... how wrong I was. She posted for help on wednesday at about ten am. my phone rang non-stop till nine that night with people wanting to do anything. I was blown away-people called for the next three days. So I am writing here because I have no idea how else I can ever thank you all. The last three days have now come and gone and as I stood back tonight as I walked through the house after everyone had gone home I lost it. As I look back at how many people showed up for whatever time they had, and did every little job I asked no matter how bad, hard, crappy or silly it seemed and no one complained about any of it and no one slowed down till we were finished. You all have no idea how long all this work would have taken me on my own. I sent rob a text before we ate tonight and said this is the neatest thing I have ever seen and he replyed Gammy must be there running the show and how true it is. What a great family, friends, co-workers and neighbors to drop everything they are doing and help us out in this time of need.

Over the last three days we finished the whole hard wood floor, the finish work and tile are just about done, poor rod and steve are getting there on the handrail, paint is just starting, the electricians said we were using more power tonight than it would take to run the entire house. Another thanks to them as they made it so we could see most of the time tonight. We all ate very well and a thanks to all those who made that happen. We will keep moving on and finish this up. If anyone still wants to help feel free to call me and we will see when we can use the help.

So I am not so savy with this whole blog thing but from the bottom of my heart thank you thank you I will never be able to say it enough. Whether you cleaned, layed floor, worked on finish, preped paint, built a handrail, layed tile, made food, watched someones kids or anything else I have missed, I want you all to know you have helped lift a huge weight off Rob and Angel.

Thank you all, Jared

check back for a slide show of tonights work.

Extubation??? :-l

Charlie has mostly been breathing on his own (triggering his own breaths) since they inserted the breathing tube on Monday. They are going to start tapering him off the ventilator. The vent started at 25 breaths per minute and then decreased it to 15 breaths per minute and then Charlie does the other 10 on his own. He will slowly be weened until they are able to extubate him (take out his breathing tube). The goal is to be down to around 8 ventilator breaths per minute by tomorrow. The up side to this is that they will no longer need to sedate him as much. The down side of this is that they will not be able to contantly monitor his CO2. It is important to keep the CO2 normal or low around 35-45 because if it rises the blood vessels in the brain dialate and increase the fluid/pressure in the brain.

Vital signs remain stable. The need for the BP med has been low. He tolerated the transfusion well without any reactions and his Hct has jumped up to 39 (normal!!!). The fever has come down to 100.5. He is calm and sleeping with a blanket and a cute stuffed monkey. We are hoping for a low CRP in the morning. (For those of you that like these details like I do...a normal CRP is 0.8. When Charlie came in it was 32, Tues=12, Wed=6 Thurs=5 Fri=9)
--posted by angel

Origin of Jack Jack

Shani wrote this and I thought I would share it with those of you that don't know the story of the "Jack Jack" nickname

I have had several people ask me where the "Jack Jack" part of Charlie's blog address comes from, so I thought that I would clear it up for those who are out of the loop. Around the time Charlie was born, his big brother Britton was a big fan of the movie "The Incredibles." As many of you know, Britton loves to act out his favorite movies and charaters and this was no exception. Rob was always required to play the part of Mr. Incredible, while Angel was assigned the roll of Elastigirl. Britton did a superb job of being Dash and he naturally thought that the new baby would conveniently fit into the roll of Jack Jack. Before this sweet baby was even born, he had a reputation to live up to with his super hero brother. For the first little while, Britton refused to call Charlie anything other than Jack Jack or Jack Jack Attack, and even now if you ask him what his brother's name is, he will frequently tell you "Jack Jack." So thus you have it, the origin of Jack Jack. And of course, we expect some super hero things out of him. Especially now! By the way, I was going through my "healthy" Charlie pictures and I decided we needed another one of his smiling face and big inquisitive eyes to float around the world wide web!

posted by Shani

Mak'in a Paddle :->

While getting his MRI Charlie had the crew (2 rn's, 1 rt, 1tech and 1 doc) stop by the Home Depot and pick him up a plank of wood because he's fix'en to make a paddle. My little boy is sick and tired of this creek he's up and he's fighting like hell. MRI results were no different than yesterday. Thank the Man above. Nothing on the scan to suggest that there are any pockets of missed infection and his fever is down... almost normal. Another thought I just had is that he might be making his paddle because he felt like he needed to contribute to the monumental carpentry effort that is going on at our house and build something himself. [Authors note: Rob is not a humble man by nature. Some would say arrogant and few things in this world shake him to the point of humility. It takes things like a Yergeson Field goal to beat the Coogs, Alex Smith being born, Urban never loosing or everybody he knows putting their lives on hold to come to the aid of a pompas undeserving ignoramus and finish building his house.] I've told him to give up carpentry now, go to school, get a real job so that you don't have to work for a living. Nevertheless, the Extreme Home Makeover that is going on right now has me floored. I can't believe how generous and selfless all of you are to help us out. I was crapping bullets when Charlie first got sick worrying about how I was going to be ready for cabinets that are coming on the 11th. You folks have saved me and Angel and I will never be able to thank you enough. Once we move in the work you have done for us will be a daily reminder of how great all of Charlie's friends and family are. In the style of the eminent Thomas S. Monson. A prideful man has been humbled and hearts were touched, spirits were felt and tears were shed.

From what I understand I wasn't the only one that learned a lesson in humilty tonight. Rodney, I hear we had a little woops tonight. Thats why the handrail is alder, it's cheap, I chose it because I thought it was going to be me and I am a giant woops waiting to happen. Secondly, "NEWSFLASH", tonight Landon Clark came in to visit Charlie and bring us dinner (thanks pooky) and he was wearing a BYU COUGARS t-shirt. The Lord smiled. Anything to help and honestly Landon I needed that. It gave me something to smile about. Photographic evidence will follow.

Everyone, you are unbelievable and as for now your prayers are working. I am typing this right by Charlie's side and he is nice and calm, sleeping. Lets keep hoping, praying and believing.

This is Rob's sister,Erin. I teach 2nd grade at Parkside Elementary in Clinton. I was a mess on Monday (like many of you) and so I had to tell my kids a little about why I was so sad. Ever since my students have been drawing pictures and asking about Charlie constantly. One of my sweet students had an idea to sing a song to Charlie because music makes her feel better when she is sick. We all wanted to sing but we had short notice so the song isn't the most creative. ( I didn't think it would be a good idea to say "we're praying for you" at school so "we're pulling" instead.)

He's cute even when he's sick!

In the ambulance riding to PCMC. No fever, just fussy
In the ER, letting us know he doesn't feel well. We still thought it was the flu

In the ER waiting for results before any tubes

Wednesday- Blanket to keep him warm while his fever is down

Thursday night- saying good night

Thursday was an OK day so I can smile a little

Friday morning=Opening his eyes voluntarily for the first time since Monday night

Another road trip :(

Dr. Hillary (works with Dr. Osguthorpe) came in to explain that they would like to do the MRI today at 5:00. She explained a little more about the gram stain sample that was taken from the spinal tap that diagnosed his meningitis. She even showed us a picture of a typical bacteria meningitis gram stain. The strep pneumococal bacteria is "gram positive" so it reacts to the staining material by turning purple. It also clusters in pairs. Earlier we mentioned that they would be testing his blood for appropriate antibody formation. Charlie was immunized for meningitis at 2, 4, and 6 months so they were curious if he made the right amount of antibodies in response the that exposure. He did! That is good news that there isn't an underlying immune problem. The next question is... Did his body recognize the organism when it came? We won't get this answer until later.

Dr. Filloux (previously we hae referred to him Dr. Fieu, sorry), the neurologist checked him out and said he is glad to see he is a little more alert. His legs aren't as tense and will pull away. His arms are very tense and clenched. He would like to have seen less posturing and equal eyes but this is still one good sign. He also agreed with Dr. Osguthrope that an MRI would be a good idea. Since they are doing an MRI of the brain they might as well check his spinal cord for any chance of abcess (pocket of infection) in or by the spinal cord. If there is they might drain it just like if there is an abcess in the brain.

He was looking around and aggitated for quite some time this morning. He even crinkled his little face in an effort to cry. It broke my heart.

posted by Angel

Poor Parker :l

Dr. Osguthorpe came in and checked his exam and found increased posturing, and dialated pupils that were not as reactive as before. This seems to be the way he gets when he gets aggitated. When he has time to relax his pupils go to a 2 (left) and a 3 (right). He definately wants to do another MRI but he doesn't know if it will be today, tomorrow or Sunday. His CRP is elevated but his WBC (cells that elevate to fight infection) are finally normal. So once again Charlie is a confusing patient.

After researching the literature of severe menigitis cases he is "not as optomistic as he was a couple days ago that Coop would be the boy he was before he came in." Rob and I expected this after the MRI results but the Dr just reaffirmed it.

They are increasing his feedings today and he just pooped again. Poor Parker that had to clean up. And not two seconds after closing the diaper he started again.

I like to watch him open his eyes anytime someone moves him even though it makes him mad.

posted by Angel

More infection? Maybe? :-{

One possible reason for his increased fever is pockets of infection in his brain. Yesterday Dr. Osguthorpe said he thought the fever was just the bodies response to damage but that the bug is dead. They did a blood test called a CRP that is an indicator of infection. Charlie's started out high a several days ago and then trended down but has just turned up a little. With this new information and the fact he he has a fever they may do another MRI today to look for any pockets. IF they find an abcess there is a possibility that they will need neurosurgery to drain the pocket. But in order for that to happen the neurosuregons need to feel it is a substantial absess. As of right now they are not sure whether to do the MRI today and if the absess is small neurosurgery won't want to do surgery or wait until tomorrow for a better picture of his neurological exam

On a lighter note...As of 8:00 this morning his pupils are more responsive and bigger than yesterday :) When getting that checked he will move his eyes side to side. Also his legs are not as stiff and will pull away when they pinch his toes. He has moved his legs and arms a couple times on his own, usually after people are messing with him. His liver enzymes have come down a little in response to the decrease in antibiotics. Other blood platelets are up to 228. Hct has gone down to 21- he may need a transfusion if he reaches 20. - Angel

Friday morning

Grandma Kathi just called and everthing is looking good!!!!!!!! Charlie is still on pressors, but just a 'titch'. He still has a fever of 101 and his puplis are still unequal. There was mention of more poop that actually led to Charlie's first bath at PCMC. As part of the bath, the nurse weighed Charlie. After a day on lasix, all the aformentioned pooping.....the kid still weighs 3 pounds MORE than he did when he was admitted Sunday night. No wonder he doesn't look like the Charlie Cooper we know and love! We still have a totally sick kid but he isn't worse and we will GLADLY take that anyday!