Patiently Waiting

Charlie has spiked another fever of 38.4 C (101.1 F). The nurse gave him Tylenol and is stuffing ice packs all around him. As you can imagine he is very upset about this. His heartrate remains elevated at 184 bpm. He just recieved morphine to help calm him down again. Since he woke up, he has dumped/drained a lot of CSF (28 cc/h20 in less than an hour). I recieved some advice from a visitor tonight that I am too nice and need to be a little more assertive to facilitate Chalie's care. His MRI was completed at 11:30 am this morning and ordered in sort of an emergent basis to assess a possible reason for his seizures. From working at a hospital I know the results are in the computer usually within an hour or two and we still have heard nothing almost 12 hours later. I asked if I could just have the report and the nurse said it is policy to have a Dr. tell the results prior to giving a copy of the report. I requested for the nurse to call any doctor that would be able to just read the report to me. The resident said she can give me results but won't be able to answer many questions about it. So she will be coming in a couple hours after she admits some patients. "I said that's fine, I'll be here." I really do need to work on this assertive stuff.

If anyone wants to check back at 1:00 AM I'll still be waiting

----Angel

Saturday Night Update

The update is that there is no update. Today has been unremarkable and Charlie has slept a ton. What a good boy. We haven't heard anything about his MRI so we are told that the lack of news is a good thing. We hope that things will stay peaceful.

Footwear-Spring Collection 2008

Unfortunatly, our kids have to deal with the constant struggle between The U and The Y.

Another MRI

Neurology requested a new MRI to be done today in light of the recent breakthrough seizure activity. They have reserved two appointment times for him one at 11:30 where they will try to get him to hold still with just a loading dose of phenobarbitol. (slim chance) The second time they have is at 4:00 for if he won't hold still and they need to sedate him. In order to give sedation medication he needs to not have anything in his stomach for 6 hours so he is off of his feedings for the time being. Infectious Disease stopped by and let us know that there is no new growth in any of the further CSF samples so it looks more and more likely that the staph was a contamination. They will leave him on vanco one more day because there is so much going on today. They will also plan on doing a CT next Friday to assess the abscesses in the brain. If all looks good neurosurgery will plan on internalizing the shunt the following Monday. We are anxious to talk to neurology today. I'll let you know what I find out a little later.

Moon Boots

Charlie told me (I wish) that his peeps needed to see his new runn'in shoes so here ya go. He's deceptively fast, like Travis LaTendresse, in his new sneaks so watch out. Last night was crappy for our little man. You'd think that after 3 seizures my little bubba would sleep or be postictal for a while but nope. He was only out for an hour and then we decided to keep the nurses jumpin and pull an all-nighter. We laughed and joked (well maybe only dad laughed and joked) and peed on the nurse (just Charlie) and pooped the bed (maybe both of us?). Boys night in was a hoot. Unfortunately that was the exact opposite of what Char needed because in light of recent events/seizures the whole gambit of docs is going to come by and participate in what Charlie and I call the "Poke Parade" (Shannon I said Poke not Pork, don't get excited) where everyone works him over, scratches their heads and unanimously concurs with "let's up the dose." I say this all with my tongue quite far into my cheek as we are all very confident with the care Charlie is receiving w/ the exception of Residents that call the lower north forty home, but that just seems to be the routine. I'm hopeful that after all the horse cookies are cleaned up from the parade our little boy can get some much needed sleep and knock off this seizure business.

Seizures and Sushi

Our good buddy Sammy brought up some great sushi tonight and Angel lost her raw fish virginity. She is yet to make up her mind how she feels about her maiden voyage. I say that the seas were smooth and willingly gave up its bounty so that we could dine and feel like we were way cooler than we really are. Thanks for the experience Sammy.
Seizures suck. Over a week has passed and we thought that Charlie was done w/ this seizure nonsense. Well, he's fooled everyone again and went ahead w/ 3 separate seizures tonight, 2 of which were after IV Ativan was administered to halt the 1st. This is all very disconcerting if you'll understand that he is already on 2 drugs given prophylacticly with the aim of smacking the brain squarely in the face before it even thinks about misfiring. The 1st one lasted 10 min, 2nd maybe 5-10 min. but don’t know for sure because we were feeding our faces and we heard his ankle casts clicking together, 3rd lasted 25 min. and cleared on it’s own. All 3 occurred in about a 90 min. span. The good thing is that he is now post ictal and will hopefully rest for a time. He was having a pretty tough evening tonight and seemed to turn his backside toward every drug given to help him mellow. The confusing thing is that throughout the episodes his vitals stayed steady so there is no real way to tell from the monitor what is going on so Rob gets to maintain a bedside vigil to watch for a repeat performance. I knew that pulling fire guard in the army (Staying up all night to watch for fires in a solid concrete building that can’t start on fire.) would come in handy. There really is military intelligence.

Addendum: Just a few more details. Charlie's phenobarbitol level came back to be 27.4 (within therapeutic range) so they increased his Keppra. He had a temp of 38.4 (101.1) around 7:00 which was brought down by Tylenol and Motrin in combination.

Could Rob Become a UTE???

Ummmmm... probably not but, and this is a very big (like J-low) but, you might just see him wear ute gear to a tailgate on the hill by his own cognizance. We just had a pretty impressive visit from a great group of guys from the University of Utah Football Team. Paul Kruger 11, John Peel 3, Zeke Wiley 99 and Greg Newman 56. They came by to see our little Charlie and brought him a bag full of loot, not the least of which was a football signed by the team. Honestly it was great and what a down to earth bunch of guys. We talked about everything from last season to them looking forward to playing Michigan this year and my plea that they please be nice to Max Hall this year. We joked about the rivalry and some of the more comical events of last season. What a neat experience it was and it made Angel just a little giddy. I never thought I would say this but thank you guys and … a… “Go Utes!”

some answers :)

Sorry for the delayed post. My tummy was rumbling (as Britton says) so we ate lunch first. The Infectious Disease team came this morning and told us the organism is identified as coagulase negative staph. This is a common organism on human skin so there are several possibilities of how this got into the sample. It could have been on Charlies scalp and somehow got onto the sample, or it could have been contaminated by someone else, or it could really be in his brain. The latter is the least likely, but the most serious. So that is why they started antibiotics, if its true he is already on treatment. He is getting daily samples taken, so wednesday's sample has had 48 hours to grow. It's negative which leads them to believe it was a contamination. We feel like we did get the answers we were looking for.

They are going to increase his baclofen to see if that will help with his aggitation as well as increase the colonodine. They took him off the beta-bloker because his blood pressure is under control. He is currently being fitted for his moonboot casts. We'll update with a photo when we get one...

editors note (meghan) - rob and angel lost their internet, so they'll post again as soon as it is back up and running...

Rough Night :<

The nurse paged the attending resident last night (not from ID) and she came up to explain why they are giving the vanco. She had come by earlier to tell us but we were out to lunch. She said the same thing the nurse told me, that it is a gram positive cocci that started growing after 24 hours. They will not know what specific organism it is until a little later because they had so little to work with they had to let it multiply then see what it responds to. The called ID and they recommended the treatment. Since the process to culture the organism takes so long, hospital policy is to automatically start him on vancomyacin. The resident couldn't answer any of my other questions. I also asked the neuro-surgery residents this morning and they said I have to ask ID. Neuro did tell me this morning that the organism is not strep pneumo. It did not grow in the "Petri dish only in the broth" so that could mean it was a contaminant or it could mean it is staph. Once again they referred me to Infectious Disease. His CT on Monday showed 2 abscesses but they are too small to drain. From what I understand they are encapsulated so the presumed organism that is inside would not show up in the CSF. Yet another question for ID.

His night was pretty rough again. He started a big storm at about 10:30 and his HR slowly increased to 198 over the course of 2 1/2 hours. The nurse ended up paging the resident to give his Clonadine 45 minutes early (@11:15). They turned off his drain for the allowable 30 minutes because he had dumped 30 cc/h20 in one hour. He was still agitated so they gave IV morphine. He calmed down a little around 1:00 but it didn't last very long.

Where is "Dr. O"?

Don't get me wrong the staff here is fantastic I just felt like we were better informed when Dr. Osguthorpe was in the picture. I know we should be out of the Infections Disease portion of this hospitalization and on to the next step (rehab) but I like every little detail especially when it comes to Charlie's prognosis. I have just been told (by the night shift nurse) that Charlie is scheduled to receive Vancomyacin again due to positive results of his spinal fluid sample taken on Tues. As a review, Charlie was started on Vancomyacin originally with the Roceflin to make sure to eradicate the bug no matter what strain it was. When the original CSF was cultured it was found to be highly responsive to the Roceflin so we stopped the Vanco because it is such a strong antibiotic. The second CSF that was done before we left the PICU was cultured and found to be completely clean. Now the third CSF was taken while the drain was being inserted on Tues. We were told on Wed that it was negative so far but they continue to culture it for 48 hours. From what the nurse has just told me the fluid grew a very specific gram positive organism. The strep pneumo is gram positive so does that mean that it is still in his brain after 2 1/2 weeks of antibiotics? Or is it new infection that just happened to cross the blood brain barrier too? Has this been doing damage this whole time and could have been prevented with staying on the Vanco the first time. I have so many questions...

(Angel)

Valentine's Night

Coop received Botox in both calves to loosen his ankles and the left wrist. There is a limit on the amount of BoTox a person can have according to their weight. Because Charlie is so little he was only able to get three muscles injected so Dr. Such-Niber chose the three most concerning areas. The areas need to be massaged frequently due to the thick consistency of the medication (similar to a tetnus shot). The medication should paralysis the muscles for up to 3 months. Tomorrow he will be fitted with removable casts for both legs to start slowly flexing his ankles and stretching the tendons again. He finally has fallen asleep again after the IV Ativan. Yea!

Much Needed Rest :-)

Charlie has been asleep since 0900. I am soooo happy. I think his sleep cycles are a little screwed up but this is great. My luck he'll wake up the minute I publish this post. I think he's still on schedule for his casts today but they have been really good about not disrupting his little rest so hopefully they'll still have time. Other than that nothing new I just hope his dreams are taking him to a better place for a little relaxation, he needs it.

Happy Valentine's Day :-)

Happy Valentine's from PCMC!
I guess that means I have to leave the hospital and get something for my super smok’in hot wife today. I'm sure that she can't wait for a Harlequin Romance type dinner downstairs at the Rainbow Cafe tonight; after all she is married to the smoothest guy in Davis County. She's so lucky. We've added a "Are we storming" deal to the top of the blog for those interested in Charlie's current condition. It will give you a general idea of where he's at and one of us will try and update it as often as occasion permits or whenever we're bored. The number is his heart rate and that is the best indication that a thalamic storm is coming on, we're told that normal for a baby Charlie's age/weight is around 120 Bpm. Charlie's night was well below average w/ little or no sleeping. He had one of his worst storms in days, it lasted about 4 hours and his heart rate broke the 2 hundy mark. Boo. Medication/Exhaustion kicked in about 0600 and he fell asleep but that only lasted until morning rounds started at 0700 and all those concerned w/ Char's condition began their work. Dr. Terry (Jolene's neighbor) is increasingly troubled by our little buddies’ ankles so today he gets his Botox and casts, should be fun and w/ Charlie’s recent proclivity to agitation I’m sure he won't mind at all. Word from the Infectious Disease folks is that they want to keep him on his biotics for 2 more weeks which triggers word from Neuro-Surgery that they won't internalize his shunt until that therapy is complete. So word from Angel and I is that we'll be here for at least 2 1/2 more weeks. Now you have all the words.

Some Good, Some Bad :-)-:

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

How's this for a good cry?

an account

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

Yesterday, I got a call from a sweet, sweet, proactive friend of angel & robs, who told me she had opened an account for Charlie. so, for those who would like to donate to help with charlie's medical and long term costs, you can donate at any Utah First Credit Union. The account is in his name - Charlie Cooper Christensen. any money that isn't needed for charlie will be donated to Primary Children's Medical Center.

Again, we can't say it enough... we love you all and are constantly amazed by your show of love and support.

-Meghan - Charlie's aunt.

Thanks for All of Your Support!!!

Lucky shirt :)

Last night was pretty uneventful. He fell asleep after his midnight dose of clonadine and ativan. They are monitoring the drain to see what pressure they will put the shunt when that time comes. He goes to CT this morning and will probably get his hearing test today. We are going to increase how much time he has his wrist splints on because he his still posturing his arms. So far the Cerebral spinal fluid that they sampled in the OR has not grown any organism. I'll post more later when I get the results.

Overall a Good Day :)

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

Good News: The drain must be relieving some pressure because we heard a cry for the first time in 16 days. I never thought I would want to hear my boy cry but it totally made my day. The cry was more of a facial grimace and then a groan. I will try to figure out the video capabilities so you can see it. I hope it’s a good sign that he is becoming a little more aware. He will have a repeat CT scan in the morning to evaluate the progress

Settling Down

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

Surgery is Over

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

Keep Your Fingers Crossed

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

I Spoke Too Soon :(

Turns out that Charlie did have some news and I'm not sure how to feel about it just yet. The results from his CT scan came back and showed a significant increase of fluid build up in his head. One of the folk from Neuro-Surgery came in and gave us the news. So in the morning he'll head back to the PICU and have a drain placed in the soft spot on his head. Hopefully this will help improve his condition. We're not sure how long the drain will be in but there is a possibility that if Charlie has scar tissue or protein build up issues he will get one permanently that drains through a tube under his skin down to his abdomen. The reason we are told that this is necessary is that something is blocking the natural drainage or flow of the CSF, (Cerebral Spinal Fluid) and is causing it to pool. Maybe scar tissue, maybe inflammation, or maybe damage done from previous swelling but for now we don't know. I'm hopeful that this will be a good thing and help Charlie make a move in the right direction and get him out of the stagnant pond of thalamic storms. I know how tired I am of watching him work his guts out just to breathe; I can't imagine how he is suffering. Pray hard tonight.

No News is Good News :)

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

The Green Power Ranger vs Air Med

If any of you have been around Britton in the last 9 months, you know that he is always pretending he is the greeen power ranger. While on the cruise, grandpa found a power ranger cape for all the kids in Mexico (There are no power rangers in Disneyland but Mexico? Disney even created them. go figure...) Britt wore his cape to the hospital to see "Char" for the first time. He was unphased by all of the tubes and machines and just said Charlie was sleeping. The real excitement of the day was when Shani offered to take him to see the Air Med helicopters on the roof. He met the pilot, watched one land and refuel, sat in the cockpit and even recieved a toy AirMed helicopter that he had to make land on every stair on the way back. Thanks for your patience. He loved it. "Watch out dragons, I'm in Fight Mode"

BoTox Anyone?

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

Dr Such-Niber (Rehab) came in this morning to assess him. She said his joints are more stiff than last Thursday and she is nervous about contracture. She is going to have physical therapy fit him with some splints/casts for his ankles and wrists and also increase his tranxene today and Baclofen tomorrow. Hopefully this will help him relax a little more. If the stiffness continues then they will inject BoTox into some of the tightest muscles to paralyze them for a couple months while we work on the opposing muscles. Maybe they can use the extra to erase the worry lines that are forming on my face...

Night Shift :l

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

Scheduled Meds
Labetalol 13 mg BID (control blood pressure)
NaCl q 4h (sodium chloride)
methadone 1 mg q12 (agitation/pain)
tranxene .94 mg q 8hr (slow the nervous system/seizures)
Clonidine .06mg q6 (control blood pressure)
Baclofen 1.5 mg BID (muscle relaxer)
Zantac 20 mg BID (stomach irritation)
Keppra 130mg BID (seizure)
phenobarbitol 30mg BID (seizure)
Claforan 800 mg q8 (antibiotic)

PRN- if needed
Lorazepam (ativan) 1 mg q4 (increased HR)
morphine .9 mg q2 (increased HR)
tylenol 135mg q4 (fever)
mortin (fever)
IV Ativan (seizure >3 min)

Quite a list for a 9 month old baby who only weighs 20lbs (He has gained 1 lb since we have been here)

The Sabbath :(

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

View From The Waiting Room

Sunday Morn :l

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