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, http://meganandalyvia.blogspot.com/ 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 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.

mri

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.

-meghan

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 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 shown........talk 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...

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....