Saturday, February 2, 2008
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.
Friday, February 1, 2008
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.
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
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
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
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
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
Thursday, January 31, 2008
again - you are all awesome and we all love you for it! - meghan
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.
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.
Wednesday, January 30, 2008
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.
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.
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....
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.
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.
Tuesday, January 29, 2008
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.
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.
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.
Monday, January 28, 2008
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.
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.
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.
Angel and Rob, physically and emotionally exhausted. Keep them in your prayers as well.
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....