Saturday, February 2, 2008

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


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.

Friday, February 1, 2008

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!

Thursday, January 31, 2008

to our helpers...

you guys are incredible. we never could have guessed how big a response our request for help at the house would get - i was hoping for 7 or 8 guys to volunteer some time. needless to say, we've heard from many, many more than that. we are excited that you are all so loving, willing & ready to provide service for rob & angel. and thank you to those who already have. having said that, i threw this idea together rather quickly, so i hope we are in a position tomorrow (friday) to keep anybody who comes to the house busy. we may have more bodies than jobs. so feel free to come ready to help and don't be too sad if there isn't enough to do - at the very least you can get a soda and visit for awhile...
again - you are all awesome and we all love you for it! - meghan

A New Friend :)

If any of you have wondered who "Megan" or "Alyvia's Mom" is from the comments well, I don't know either but she has a great story that has given us some hope. She has a daughter that was here in the PICU not too long ago and if you've got a little time (which is all we have right now) you should read their story, or if nothing else go there and see how cute her little Alyvia is. Charlie won't open his eyes but I told him about her and I'm pretty sure he thinks she's hot.

Shift Change :)

Things are pretty quite in the waiting room while we wait for the nursing staff to change. We are not allowed to visit his room between 7 - 8 in the morning and 7-8 at night. We are hanging out in the waiting room eating all of the great treats people have brought.

Charlie pooped for the first time since Saturday. Well actually he pooped three times with a blow-out. This may be TMI (too much information) for some so I apologize. He started recieving food through his feeding tube yesterday and his bowels seem to be handling it fine. The nurse said there are two groups of people that get excited over this "New mothers and grandmas". Grandma Cheryl was quite excited. Rob was far more concerned about the lack of moving excrement than the rest of us. I think he gets his bowel worry from his Grandma Marion. The idea of faulty elimination worries them both greatly.

Stable :)

Today has been pretty good. He has come off the norepinepherine and his BP has remained stable. The antibiotic has been decreased to a "normal" dose for menengitis instead of the super dose he was on. The lasix is working wonders for his output. He has been peeing a lot. (He is negative 200 for those of you that want details). He is still over-breathing the vent, which means that he is triggering his own breaths and not depending on the machine to breath for him. He has done this most of the time he has been on the vent which is a positive sign that the brainstem is still sending the signal to breath dispite the swelling. His fever was up to 102.2 again but they think that is just due to the inflammatory response not the bacteria. His eyes did move around while the nurse was checking his pupils and they did move towards us (Angel and Rob) when we were talking to him. We were excited for a while, but Dr. Osguthrope told us that while his pupils are unequal he probably is not responding to our voice but the fact that they are moving side to side is good.

they put a picture of charlie on his pole so the nurses would know what he usually looks like.

hand unclenched for awhile

At about 4:30 he started clenching his fists again. He does seem to get aggitated at the same time every day. Dr. Osguthorpe wondered if it is possibly due to his natural cycle of cortisol (hormone). This raises and falls throughout the day and explains why babies get fussy at certain times of day.

one of his great nurses, christine.

so excited to see each other. Brian describing how char's fists were unclenched for awhile.
britton brought charlie a duck hat

One small step for a little man. :-)

After visits from Drill Sgt. Ventre, Dr. Osguthorpe and Dr. Fieu they all concurred that Charlie has showed some small improvements. They believe that under all the sedation Charlie is concious! Yeah! Also, he is responding voluntarily to noxious stimulous instead of the dreaded "posturing." The bad news is that his pupils are still unequal which means that his brain stem is still insulted and hasn't accepted the apology of the dead bug. They are also starting lasix to draw some of his plentiful fluid into his diaper. My boy is a stud. - Rob

Good News- However slight- We will take it!!! :-)

Posted by Rob and Angel---Dr. Ventri came in earlier this morning and noticed that while they were messing with him he moved his legs a little on his own. They also noticed while checking his pupils that the flashlight shining in his eyes bothered him. They haven't made rounds yet so we don't know all the details.

Right now they are starting another IV so they will have another access incase he needs any more meds. The other places are at capacity. He's been back on "pressers", blood pressure meds since 6 this morning. Other than that he is pretty calm. Thanks for the prayers.

P.S. Thanks to Peggy and the Colonel for the spread in our room. Rob was a hungry boy last night.

Thursday morning

Charlie is really fighting! He has a bit of a fever-100 at 0400 and 101 at 0600. Tylenol didn't seem to phase it so they are trying some Motrin. He is also having a hard time with low blood pressure so he is back on the BP drip which is a bummer. Yesterday was a bad day so we are crossing our fingers for some good news today!

Wednesday, January 30, 2008

Wednesday Night :-l

After the episode of seizure/posturing he was given two doses of Ativan and increased the dose of phenobarbitol. The attending Dr. came and set another art line in the right arm instead of the left. They need a place to be able to draw his blood every 2 hours and a port for the blood pressure medication. She gave him a paralytic so he wouldn't move during the procedure and it that lasts 30-40 minutes. He seems really peaceful right now. His blood pressure started to tank (it's a side effect to the Ativan) so they had to restart the norepinephrine but was only on it a short time before it leveled back out. His sodium is low so they are going to restart it. Keeping this up will help draw fluid from the brain into the blood and then into the urine so he can pee it out. Any pressure away from the brain is good. Hct has stayed at 25. No talk of transfusion today.

They keep talking about this roller coaster ride that we got on the minute we entered the ER. The first part are the biggest ups and downs then hopefully they get smaller and smaller until we get off. The goal is to have more ups than downs.

Maybe we're not at the bottom :-(

Charlie's having a rough go right now. He had a pretty good episode that their not sure if it was a seizure or more posturing (lasted about 20 min.). Either way it is more pronounced than before. His heart rate is sky high but they are working on that, and his fontanelle is much more full than it has been today indicating increased cranial pressure (bad). Another bummer, his Art. line clotted so if things mellow out here he'll get the pleasure of having another on inserted later tonight. Thanks to Teya, Tom Vernon, the girls from A's work and Kiplyn's Richard for understanding why we weren't so cordial while they came to visit. Keep praying, things are a bit stressed. Again thanks for the comments and support it has been a rare bright spot today.

MRI Results :-(

Dr. Fieu and Dr. Osgthorpe came in and told us the MRI result. The said he has severe involvement of the white matter in the brain. It is involving several different places in his brain and even into his brainstem. The called it cytotoxic inflammation in the brain (toxic effects in the cells are causing the swelling). It is extensive and severe but young brains are resilient and adaptable. There is also swelling in the brainstem however this is the tissue around the cells are swelling (this explains the posturing) so that is more likely to be reversible. There currently is no abseses that are visible that the antibiotics could not reach but they will probably do weekly MRI's to monitor that. It may be 4-7 days before he shows any improvement and he possiblly could worsen a little before we see that improvement. The infection, has proven to be very sensitive to the antibiotics even to the point he believes it may be completely dead but the reason he feels that the MRI is so impressive is because the organism was so aggressive and there was so much of it. There is no way right now to tell what this all will mean down the road. Young brains have better ability to heal and reorganize than our old used up ones.

Back from the road trip

Posted by Angel-- Charlie got back from his road trip (MRI) about 30 minutes ago. They said he was very calm and didn't need any additional sedation (versed). They take a whole team of people with them 2 nurses, respiratory therapy, resident, ect. We probably won't hear the results for a while. The radiologist interprets it and then we will hear results from the attending resident. The MRI was ordered by Dr. Russell Osthworpe (Infectious Disease) because he wanted know if there is a pocket of infection that the antibiotics are not reaching. Charlie's liver functions (blood work) are elevated so he would like to turn down the antibiotic a little to ease the pressure on the liver. If they don't improve they may change the antibiotic to one that is not metabolized in the liver. He seems to be posturing a little more but only when people mess with him. Dr. Fran Fieu said it is the only way he can express is distress. His pupils are still reactive to light- yea! even though they are slight they are becoming more equally reactive. Since Charlie is still young his fontenelles (soft spot on his head) have not closed completely. So they are constantly checking the fullness of his soft spot. It is a little full right now but not bulging. The blood work is staying constant. HR is staying within the goal range without the medications. They have started to increase his feedings with Enfamil and protein added.

He won "Hospital Bingo" today and they brought a crocheted blue and white blanket. Of course every kid that is here "wins".

Thank you everyone for your overwhelming support and love. We have felt your prayers and cannot expressed how much it means to us. Thank you so much. I will post again after the results come.


i just got a text from rob saying charlie just got back from the mri and to hope for good results. send some prayers up now!

a helping hand...

so, some of us are having a hard time because we feel helpless while we wait for progress and watch the md's and rn's do their work. many of you have asked me or rob & angel how you can help. most of you know that rob & ang have almost finished builing their house, but there are still some things that need to be done. Rob shared his concern with me the other day that he has a deadline to have his cabinets in in 10 days and now of course he has no time to finish the things that need to be ready before the cabinets get here. They didn't ask for help, because they wouldn't, but i think with some help, we can get everything done for them so they don't have to worry about the house.

So here're the deal. over the next 3 days - wednesday, thursday & friday Jared (rob's brother) will be at the house working. If any of you can spare some time or share their skills to help with the house we'd appreciate it so much. the things that need to be done are some finish work, some tiling, cleaning, and the installing the hardwood floor. Call jared (540-6717) or meghan (560-7953) if you can help and we'll give you details...

The biggest project is the hardwood floor. jared will be working on it friday, but if we could have a good old "nordfors work party" friday starting around 4pm, i think the whole thing could get hammered out that night. let us know if you can be there, we'll provide dinner and we can get this thing done and off rob & angels mind.

we love you all so much and continue to be grateful for all your support and prayers. keep them coming.


rob & i started our posts at the same time and somehow i jumped ahead of him - so read on below....

Treading Water

Hey folks this is Rob.
Thank you all for the great show of support and concern. It really does make it easier knowing that there are so many great and generous people that care about about some lousy railroaders kid. We love the comments, texts, voicemails and visits.
Quick update.
Charlie is still, whithout doubt, up "Sh!# Creek" and we are desperatly looking for a paddle. But by damn this kid can swim. He continues to amaze us every hour. His condition is still "Critical but stable." Our biggest hope is that he's not getting worse and in most cases that are as severe as Charlie's kids are a little further south. Today is a big day for the little man. He'll have an MRI around noon that will give the doc's a better picture of what damage has been done to his thinker and also show if there are any pockets of infection that the atibiotics aren't reaching. Their a bit concerned about that because his "Posturing" (clinching fists, pointing toes, straight arms) is getting stiffer/severe. Nueronal posturing is one of the signs that you've got a pissed of central nervous system. So we're nervous about that just because the after effects of menegitis can be so severe. We are also hopeful, and my new motto is to remain "Cautiously optomistic", that because of all the faith, prayers, and fasting we'll have good news. On a brighter note, the mood of the physicians is changing. Doc's are, for the first, time talking about what they are going to do in two or three days not just right now and hope it works.
Primary Childrens has been a sanctuary and if you have a sick kid, come one come all, and if you come in a ambulance you don't have to wait in the e.r. waiting room. The staff is unbelieveable. Dr. Russel Osgathorpe has become our anchor, he is the Infectious Disease guy and our new best friend. He coined the phrase "Cautiously Optomistic" and made the comment about the severity of Charlie's Gramm stain. Dr. Ventre (or as I call her "Drill Seargent Ventre") is a phenomenal advocate and the kind of Doc you want on your side. Charlies nurses; Sarah, Megan, Sydney and Parker are a different breed. In getting to know them I've realized that if your a RN and you even remotely suck you won't ever work in the Primary Children's PICU. They are all so compasionate, informative and assuring. But I want to thank you all the most. For your prayers and encouragement, we need it and more importantly Charlie needs it. Meg and Suz, thanks for maintaining this blog, it's a lifesaver. Angel and I love you all.

Wednesday morning

Grandma Kathi just called and reported that Charlie had a pretty good night. Rob and Angel went over to the hotel (Thanks Meghan for that fantastic hook up------) to get some much needed sleep and a shower! Kathie spent the night at the hospital and she said the sleep room was wonderful. (When you haven't slept in 2 days any sleep will do!) At 0400 Charlies pupils looked a 'titch' better when the nurse checked their re activeness. He was less than please when the nurse tried to turn him on his side and that is a good sign too. These seem like small things, but we will take them! He is still REALLY swollen but the MD said that is pretty normal. Keep your fingers crossed!

Tuesday, January 29, 2008

Tuesday night:

The cat scan showed that the pressure/swelling in Charlie Coopers head is unchanged from yesterday. Sometimes babies with meningitis can develope an absess in the brain that is not easily treated with antibiotics. Todays CT did not show any such nonsense and that is a bonus.

Rob and Angel now have access to a computer so Meggie and Suz will retire our post and Rob will give a more accurate (and wordy) accounting of little CCC's fight for his life.

Tuesday late afternoon:

Well.........somethings seem to be better and somethings not so much. Charlie had another cat scan around 5:00 because the neurologist and his clan came and identified more posturing that was concerning. The EEG leads were removed and a head scrubbing (of all the glue that held the leads in place) caused the poor child a fair amount of distress as any movement of his head and neck is horribly painful. Since all the EEG stuff has been removed, the swelling of the kids face seems to have gone down a bit. A feeding tube has been inserted and the nurse was getting ready to serve a delicious dinner of pedisure. Charlie Cooper was just learning the crawling skill and Grandma Cheryl loves to rub his calloused little knees. She is so glad that the EEG equipment is gone.......she cannot keep her hands off his forehead.

Britton had a visit to the waiting room and he was pretty glad to see his mom, dad, and grandma's. I think they were pretty excited to see him as well.

THANK YOU-THANK YOU-THANK YOU for all the fasting, prayers, phone calls, and posts. We cannot believe the wonderful support that has been about overwhelming! The Infectious Disease MD (the one that said that the bacteria that colonized on Charlie's gram stain was worse than any he had seen in his entire career) said that this afternoon he is 'cautiously optimistic' about the resolution of the infection. We know that Charlie is being blessed and watched over.

Tuesday noon update

i met with rob & ang today for awhile and here is what i learned. He hasn't gotten worse, but not much better yet either.

Charlie had received all 3 doses of Prevnar (at 2,4,6mo), the vaccine, and the MDs are not sure why his body didn't recogize the organism to fight it. There is like a 1% chance he has some immunosuppressant issue.

They are going to stop the norephinephrine because his blood pressure is remaining steady. He was on it for 13 hours and anything less than 24 hours is preferred. They also stopped the vancomycin because they learned that his strain is responsive to the Rifamphin. He is getting an NJ feeding tube today. His liver enzymes were low, but they have come up. THey were concerned about his kidneys, but they are doing better and he is wetting diapers "like a race horse" Rob says.

He has not had anymore seizures since yesterday. They are still waiting for the Neurologist to come read the eeg, and we'll update on that when we can. He is on phenobarbital and a little fentanyl. Yesterday his right pupil was nonreactive and left was slightly reactive. He has some cross reaction on the left and none on the right, which is right in line with the right hemisphere swelling in his brain.

Angel said she is maybe not feeling optimistic, but realistic and hopeful. miracles do happen. but he more than likely has some damage. I guess the first 36 hours after diagnosis are the most critical, and we have passed that point, which is good. we will take any improvement however slight. We will keep updating any changes - however little and are so grateful that he hasn't declined. I know how many people are praying and fasting for this little man and it is incredible. please keep it up. rob & angel send their love and gratitude. They will be getting their laptop tonight and will try to post on the blog.

in case you're worried about britty...

don't be. he is having a great time. He's a very resiliant little boy and luckily is used to change. He's been playing with grandma, cousins, aunts and uncles. and green power ranger gets to have lots of sleepovers with his best bud ryry (blue power ranger). unfortuantely ry wants to sleep in the tiny bed with brit instead of his own.... and don't worry rob & a, he's by his fav place - the heat vent...

Tuesday 0700

Charlie's hct is the same. The MD's want to keep his mean blood pressure between 55 and 65 to keep the pressures in his brain low. He did so well during the night, the medication to keep his blood pressure up was turned down. YEA! All the MD's will be making their rounds this morning so we look forward to some encouraging news!

Tuesday 1am

Angel says his hematicrit was up one point to 26. So no order yet for a transfusion. The next draw was at 4am. No word yet how that went. please - continue your prayers for this baby...

Monday, January 28, 2008

Late Monday night:

At midnight more labs will be drawn and depending on the results, a blood transfusion may be in order. Charlie Cooper also has a low potassium so that is being watched closely. The EEG machine is clicking away (the neurologist hasn't read the test), but he is getting phenobarbitol to stop the seizures. The artline and PICC line were inserted and a norephinerine drip was started to keep his blood pressure up. As of now his pressure is holding steady...

Rob and Angel REALLY appreciate all the concern everyone is showing. They don't want to offend by not returning the messages that are being left but they cannot have their phones on. Hopefully Tuesday they will be able to check the blog and respond to your comments.

PLEASE keep Charlie Cooper in your prayers.

Monday Evening:

The cat scan showed an increase in swelling. boo. Charlie has had a seizure and a titch of ativan stopped that business. An arterial line (a line insterted into the radial artery that measures blood pressure as well as provides an avenue to draw blood thus reducing the pokes) was placed and Charlies blood pressure was pretty low. He was given a fluid bolus which brought his pressure up. Currently a PICC (peripherally inserted central line) is being placed so that some medication can be given to increase blood pressure as the last thing a swollen brain needs is fluid. An EEG (electroencephalogram---a test that measures brain activity) is planned for this evening. His platelet count (the part of the blood that does the clotting) is lower than earlier. No word on the possibility of any blood transfusions.

The MD's told Rob and Angel that as this disease progresses and antiboitics are started, Cooper will get much sicker before he gets better and it appears that is exactly what is happening.

the facts as we know them.........

So............these are the facts as we know them. Likely not so accurate but the best that we have until the parents can correct us.

Saturday: Charlie spends the night vomicking and he is a bit lack-luster. Angel takes him to the Instacare where she is instructed to push the pedilyte.

Sunday: There is a fever, listlessness, and vomick. Another trip to Instacare-more pedilyte and instructions to come back if the diapers are dry.

Sunday around 5:00-Back to Instacare due to dry diapers. The ambulance was summoned and off to PCMC Angel and Charlie go with Brit and Rob in the car following behind. Once at PCMC there was a chest x-ray, lab tests, and a lumbar puncture. The lumbar puncture was sadly positive and off to the ICU they all went with the diagnosis of Pneumococcal Meningitis.

Monday early AM: Charlie Cooper begins to receive LARGE doses of vancomycin and rifamphin. He is awake but miserable and the MD's cannot administer anything to alleviate the poor childs discomfort. The antibiotics are given every 6 hours and getting sick before getting better is normal. A baseline cat scan is done.

Monday morning: The infectious disease MD came and said that in all his years he hadn't see the amount of bacteria on a gram stain that Charlie had produced. Complications were discussed (hearing loss, dain bramage, seizures). Charlie is beginning to posture (a sign of trouble in the brain) on the right side. Due to the dehydration from several days of vomicking a lot of IV fluid was given so the poor child was quite swollen and puffy. Boo.

Monday lunch: Meghan went to the hospital to sit with Charlie so Angel and Rob could take a breather. Charlie is miserable and Meghan is heartsick.

Monday afternoon: The MD's decide to intubate (install a breathing tube) Charlie as a safety precaution before repeating the cat scan. Luckily, Beth was visiting the parents and she was able to stay with Charlie during the procedure as parents are asked to step out. After the intubation, Charlie seems more comfortable and he heads off to the CT. At this point, Rob and Grandpa Brian administered to Charlie. Never have we needed the power of the Priesthood like we do now! The MD's have done a test on the response of the puplis and the results were not good.

Angel and Rob, physically and emotionally exhausted. Keep them in your prayers as well.

A Blog for Charlie

This is a blog for Charlie Cooper Christensen. We love this little man very very much. Charlie was diagnosed with Pneumoccocal Meningitis today and is very sick. He is at Primary Children's Hospital being cared for by some great doctors and nurses. He is working really hard to get his little body well. We (Meghan & Suz) will update this as often as we can for people to check back.

We would ask anyone who is checking this or concerned for our little Charlie to please pray for him. We will take all we can get. Our family and some friends are having an organized fast tomorrow, January 29th. Please join us as well if you can. Feel free to leave comments if you would like - I know Rob & Angel would love to read them and know how many people love and are concerned at this time....