Charlie has pretty much slept all day so he can stay up all night to party with Rob. He has only been awake a couple times today and then gone right back to sleep. We had good news this morning about the cochlea looking good but the CT also showed something in his left ear that could be an ear infection. It was a slim chance because of all the antibiotics he has been on but Dr. Harlan came to check it out anyway. He had to dig out quite a bit ear wax but then found that it must have been just fluid not an infection. Yea! He only woke up a little when he was digging in his ears but then went right back to sleep. We are starting to use a great invention called a versa-form pillow that conforms to any position including sitting and then cradles Charlie’s body to hold it there. It looks really comfortable and it can keep him bending his joints instead of stiffening/posturing so much. He is scheduled for neurosurgery at 9:30 Monday morning and we will consult with the ENT surgeon regarding the implants. Monday will be a busy day for our little man. (Angel)
Dr. Schwartz from Rehab came by w/ the results of Charlie’s CT from last night. Charlie’s ears and cochlea’s look great meaning he is a candidate for implants and the probability of him being able to hear is good. We’ll have to see when they might actually do the implants because it’s kind of a no no to do them on kids under 1. I’ve done a little research on cochlear implants and they are little gems of sound and they usually do much better in little kids than adults, good news. Some interesting things about the implants that I didn’t know are that the sound isn’t like what we’re used to, it’s more digital almost robotic. They pretty much only work for hearing voices in quiet settings and all voices sound the same so if sometime down the road you call Char on the phone you’ll have to tell you who you are because he won’t be able to tell . We are so excited that this might help our little man because no one should have to go through life without having heard the PA announcer at Lavell Edwards Stadium say “And that’s another Cougar FIRST DOWN!” I found an interesting bit on the NPR (National Liberal errrr… Public Radio) website about how those w/ cochlear implants hear music. You should check it out if you have 4 minutes and 39 seconds. http://www.npr.org/templates/story/story.php?storyId=4961269 At first I was sad that Charlie wouldn’t be able to enjoy all the great music that is out there and hear how great his dad does at the Messiah sing in every Christmas but at least we might be able to communicate. Anyone who reads this don’t tell B-Low that Charlie is getting implants because we still want him to learn sign language for Kathi’s sake.
Work, Work, Work. I can’t tell you how glad I am to be back at the hospital after a few days of reality. I felt like a prisoner trying to adjust to the outside world after a lengthy sentence. The hardest thing for me to re-habituate was the understanding that once you leave the hospital, clocks start working again and the real world goes on whether you’re in it or not, it’s brutal. I thought I was going to be in town working local so that I could still come up here at nights but mother nature decided to slap Wells Nevada, and her houses of ill repute, in the face w/ a little earth shaker and we had to go. W/ any large quake trains stop and we have to inspect the entire railroad w/in a hundred miles so that any repairs can be made and trains can move thus keeping the shelves of Wal-Mart full and the consumer happy. All important stuff but it was way hard not to think about my little buddy Char the entire time. The other kick in the pants was that cell service in northeastern Nevada is well below average making updates for a paranoid father overly difficult. Enough about work. Last night Angel and I got to go out another date, thanks to The Weed, Wuggs and Fish, and apart from having a great time w/ a scream’in hot wife and some stupid good food I realized that I wasn’t being a very good husband. Here’s my point, since Charlie got sick we’ve now been on as many dates in a little over three weeks as we had in a year or two prior. Sad I know, Charlie has taught me so much already and why not also throw in a lesson on lousy courtship just to show the old man how far he still has to go. Moral of the story, fellas, get out the house and date. You might just find out that you still like each other. My wife is great and all my sisters/mothers will attest how undeserving I am to be w/ her but I do love her and not just because she’s hot. Charlie’s night wasn’t bad, but it wasn’t great either. I think he is settling into a routine of sleep for a couple of hours, storm for a couple. Our good friend clonadine still seems to work best for him so they are looking into cutting his dose in half and giving it more frequently. I stayed up quite a bit last night just watching him and it’s amazing, when he’s asleep he looks just like a normal baby, not sick at all. I just hope that when he is asleep he doesn’t feel sick at all. We haven’t heard any results from last nights CT scan that was checking his Cochlea’s but didn’t expect to until the Rehab Doc’s come by today. Let’s hope they are soft, soft like Luke Neville (Sorry Landon I couldn’t resist).
Charlie also had his first PT session in the gym. Janine is amazing! He swung with the therapist for a while then relaxed on a big bouncy ball. The ball is usually used to help kids strengthen their back/neck muscles but with Charlie we were working just the opposite. He loved the pressure on his tummy and fell asleep
Dr. Such-Niber talked to a colleague from the health department today regarding Cochlear implants. He said that meningitis cases are different than other hearing loss patients and they should implant ASAP because the cochlea can ossify (harden). If it hardens Charlie will no longer be a candidate for implants. It is also beneficial to implant before speech development so he can hear himself while learning to form words. They may need to see if he responds to hearing aids before he is allowed to be a candidate for implants. I think that is due to insurances not wanting to pay for implants that cost up to 25,000 each ear when a hearing aid only costs 2,000-3,000. Another CT scan will be done tonight or tomorrow to look specifically at the cochlea. The previous scans showed no ossification yet but it was 10 days ago. We are praying for soft cochlea.
Grandma Kathi stayed the night with Charlie and she said it was pretty mild. There were a couple of storms, one ending in a diaper blow out that necessitated an entire linen change. I’m sure it made him feel much better afterwards. The nurse was really proactive in giving Ativan and Morphine at the same time which seemed to calm him down. His left cast is being left off to decrease the agitation. I am told that these storms almost always go away over time. I think it must have something to do with the brain re-regulating itself. It is expected that before we go home they will subside completely. The vision test and swallow study will not be done until we get closer to going home because he needs to be more alert in order to get good results.
Today has been a little rough for Coop. He has had quite a few storms despite the increase in clonadine. Now he is almost at the maximum dose clonadine so the team has decided to add propranolol (beta blocker). He had one storm that started at noon (after receiving clonadine) and it didn’t stop with any medications including ativan and morphine. Then after he received his next clonadine dose at 4:00 he totally mellowed out. Go figure… Dr. Harlan (the new attending doctor) discussed treatment with rehab and the plan is to go ahead with the shunt surgery on Monday and hold off doing any sort of feeding tube surgery for a while. The thought being that in a week or two we will have a better idea of his gag reflex and hopefully have the storming under better control. If they put a tube in his abdomen now and he continues to arch his back like he does during storms it will not allow the area to heal. Charlie is still pretty sick so the prediction is that we will be here at least a couple more weeks if all goes smoothly. He has also completely wiggled himself out of his left cast again. Janine from physical therapy came by to see our little man and said we should leave it off for a little bit and see if he is less agitated. We may try a splint similar to the wrists that can be removed if necessary. Janine has the magic touch with Charlie as she calms him down everytime she comes. I need lessons. (Angel)
Last night was about the same as yesterday. He is still storming about every 3 hours or so. Dr. Such-Niber increased clonadine because that seems to work the best to calm him. She would like to get the storms under control so we don’t need to use Morphine as much. If they continue, we can increase the tranxene tomorrow, but then Dr. Such-Niber will consider taking off the casts to decrease agitation and deal with ankle problems down the road. I inquired about what damage could be done if he storms and we don’t stop it and her concerns were mostly about sustained muscle tension that can lead to muscle breakdown. His heart seems to be handling everything (storms, medication etc.). She does not want to put in a feeding tube until after the storms are under control because the back arching displaces the G-tube or J-tube. Neurosurgery is still planning on Monday for internalizing the shunt. The CSF samples have remained the same since stopping antibiotics. The attending team will be by later this afternoon to check on Charlie. Due to the earthquake in Wells, Nevada (6.3) Rob has been called out of town to check all of the bridges nearby. He should be back by tomorrow but he misses his boy already.
Charlie has had a few storms from late afternoon through tonight. He started his most recent one at 9:30 and received Ativan around 10:15. It seemed to calm him a little but not completely. His heart rate is still at 177 and he’s sweating but he doesn’t seem to be breathing as hard as an hour ago. He is also working on becoming the next Houdini. His left leg has wiggled partly out of his cast several times today. I compare it to taking off a tight cowboy boot by just pointing your foot. He doesn’t bend any other leg joint except his ankle (straight leg and hip). Then add in a paralyzed calf muscle due to BoTox. I double dare you to try it. (Angel)
---If you only want to know how Charlie is currently doing...Skip to the bottom of post---
I spent 30 minutes on the phone today with Debra Jensen from the Davis County Health Department. Because streptococcus pneumoniae meningitis is an infectious disease it is automatically reported to the health department to track outbreaks. She asked a few demographic questions and then read over some material they have regarding the bacteria. Some of it we may have already posted but some may be new information. They generally see this in the winter and early spring usually in people that are immunocompromised (like transplant patients) or have other health problems (like heart complications or diabetics). Seniors and young children are more prone to this bacterium because their immune systems are usually not as good at fighting it. For some reason African Americans are more prone as well. The bacterium is spread by airborne droplets or direct exposure. People with healthy immune systems can be carriers and not have any symptoms. Symptoms of the strep pneumo bacteria are rapid fever onset, ear infections. shaking, flu-like chills, headache, shortness of breath, disorientation from hyper-ventililation, occasionally stiff neck, pneumonia. The treatment is antibiotics. After 48 hours of antibiotics it is no longer contagious. Probability of death is higher if under the age of 2. Humans are the only reservoir for these bacteria to grow so it is difficult to do research.
She also gave me a couple statistics about Davis County. Charlie is the 1st infant she has seen with this since she has been there (only a couple years). I don’t think I like being 1st anymore. So far this season there has been one other adolescent and several senior citizens. A few years ago Davis County had a severe season for streptococcus pneumoniae and had 8. Utah’s vaccinations that children receive at 2, 4 and 6 months only cover 7 of the 99 strains. The seven that are included are supposed to be the worst strains. Charlie’s sample was tested against the 7 that are covered in the vaccine and was found to be different then the seven. They will be able to do more extensive testing next week. There is also a vaccination that is given to adults or immunocompromised children (2 yrs and older) that covers 23 strains. I am told by another source that other states and countries have increased the amount of strains in their routine children’s vaccine to expand the range of protection. Britt was the first to sign his letter to Cooper's new casts! Today has been pretty calm in Charlie's world. He woke up at 3:30 and started a small storm (HR only got up to 188). He was sweating so bad that his EKG lead came off but no fever. He recieved Clonadine at 4:00 and was back to sleep by 4:20. (Angel)
A few people have called inquiring about an update. I have only been here for a couple hours and he has been sleeping the whole time. Aunt Susan sat with Charlie this morning while Rob started back to work and I went to spend time with Britton at preschool. Susan said that the neurosurgeon has put him on the schedule for Monday to internalize the shunt. They have also decided to hold off a little longer on the G-tube to see if he gets his gag reflex back. So far a really quiet day. (Angel)
Our little man had an average night. He got pretty ticked off a few times but he also knocked it down a notch and enjoyed some decent sleep. He has just received a handful of morning meds so hopefully he will forget his dislike for routine oral care and take a nap.
Sum of ya’lls have wundered what all this mess is w/ a G-Tube. I’s will enlighten. Since Charlie cain’t swallow nun too well there fittin to set him up w/ a tube so as we can use to feed him when we go orda tha house. It’s pert near the simplest idear you could come up w/ to feed a boy. They put a tube agin in his gut w/ a lid on it. See’in as how the feller cain’t swalller near as good a he used to could they figger this’ll be best. We aint never gonna know if it'll be a forever thing but I think Char might could swallow again and then they can git her out in a jiffy. STOP! I can’t do it, that was the hardest thing yet for me to type but I wanted Thacker, Shannon, Shane, Bruce, Landon, Whit, Marilee, anyone at Ralph Smith Trucking, Railroaders and anyone named Zeke to understand what is going on. People w/ indoor plumbing version: G-Tube is short for gastronomy tube and is the most appropriate way to nourish those who have upper airway issues and or muscular instability, conditions that often lead to food/liquid going down the wrong pipe and into the lungs which leads to aspiration, all bad. With Charlie he still doesn’t have a gag reflex or a great cough making oral feeding improbable at this point, not to mention his jaw is clamped so tight that we can’t even see if he has any new teeth coming in. (He had two when we got here.) A G-tube is a small tube that is surgically inserted in the abdomen creating a portal to the stomach. However in Charlie’s case a J-tube or a GJ-tube we feel is a more viable option. A J-tube is inserted in the same way but it bypasses the stomach and feeds the jejunum, a portion of the small intestine. We like this idea better because there isn’t the risk of vomiting and subsequent aspiration. A GJ-tube is a combination of both. The issue w/ a G-tube is that they would most likely perform a “nissen” (procedure where the esophagus is tied off where it meets the stomach to prevent any thing coming up that might cause aspiration.) at the same time and that is irreversible and from what we here they don’t always work as desired. Long story short, G, J or GJ-tubes are all ways to get my boy fed until he can eat on his own, we hope. If this answer was insufficient to inquiring minds that’s what you get for asking a railroader medical questions. So all you’en have a good night now ya hear. (you’en = ya’ll plus 3.)
Charlie held out through a very busy morning and did his best not to storm but to no avail. After the bath, casts and some random medical aggravation, my buddy said enough is enough and flew into his first storm in over a day and a half. There is some good new associated w/ said storm and that is Charlie was able to calm on his own w/o need of meds. He whipped to a heart rate of 202 and now he is asleep and at 165 and falling. There is a first for everything. Hopefully this will be long nap. Met w/ one of the general surgery doc’s about getting Charlie’s G-tube put in and they’d like to do it before he gets his shunt internalized so maybe the end of this week. The Infectious Disease Doc’s are confident that after 18 days of antibiotic treatment they can safely stop Charlie’s therapy so no more “biotics” for now. They are going to do a full work up to evaluate Charlie’s immune response so we can tell if after the meningitis he will be any more susceptible to future infections. I have tried my best to be more “calm, coherent, easy to read” w/ this post as I am fully aware of my constant anathema of pretentious diction and predilection of incongruous rumination.
Charlie had a really good night. He would wake up and cry and then go back to sleep. He is currently really peaceful and sleeping. Infectious Disease will be reviewing the scans with neuroradiology today so everyone is on the same page. I have asked the Infectious Disease Docs what strain of strep pneumo bacteria Charlie had because I have been told that Utah only vaccinates for 7 strains out of 100 (?). We should have more news to write later today.
I'm happy to say there isn't much to report. Rob has spent the day at the hospital while I got out and picked some final things for the house. He said Charlie has been sleeping very peacefully all day. He will wake up for a few minutes and cry a little and then fall back to sleep. But no "storming"! I hope that by not using all his energy to "storm" he is funneling that energy to heal his brain. He has also been taken off of oxygen today because he is able to keep his levels high enough without it. Rob reviewed the MRI's with the neuroradiologist and he said it was about the same as the first MRI. I wish I was here for that discussion but oh well. We are happy with the way Charlie spent his holiday! We hope yours was as good.
Charlie just woke up from a 6 hour nap! Hallelujah, and even though he is now awake and crying like crazy his vitals are holding steady. The best thing about his nap is that when he woke up he kicked off the cast representing the team that plays at Lavell Edwards North. With this indisputable evidence Rob is now the proud father of not one (Britton) but two young Cougar fans. I know some (Landon, Troy, Angel, B, Tipp, Any Chilton, Mouth breathers in general) will argue technicalities of cast preparation and application being faulty but know this it was a graduate from your “School of the Prophets” that is responsible for Charlie’s casts in their entirety. It is a great day in PCMC, Cougar town and the rest of the world. I got to meet Char’s new Attending Physician Dr. Harlan today and there wasn’t really any new info, I just wanted to get on the same page w/ him as far as Charlie’s goals and expectations are concerned and I think it was good. His main goals are to get the shunt inside, stabilize meds, control storms and install a G tube. Best case scenario they figure this will all take at least 2 more weeks. Lets all pray for another long nap and some more baby steps. On a side note, the Prophet may have gone to theYew but where are his season tickets?
Last night was a schosh rough for our little man. (A schosh is in between a smidgen and a hair.) About 0330 he started to storm pretty good but this time he was sweating like a snowball in Hades. It isn’t uncommon for him to perspire some w/ his storms but this was like his old man after a 3 min jog, dripping. They had to change his picc dressing twice he was leaking so badly and the tape that holds his feeding tube in was coming off. That proved to be costly later on. When they were doing their A.M. checks they felt it prudent to weigh Charlie por que, I don’t know. He is supposed to get weighed every 24 hrs and he had been weighed around 1600 the day before so I inquired of its necessity; “Well he’s awake so we’ll do it now.” I’m sure this CNA was just doing what she was told but it turned out to be ill advised. Long story short; while moving him to the scale from the bed Charlie’s feeding tube got jerked out. Dad got pissed, made comments about individual levels of competence and sat indignant the rest of the morning. Now Charlie is down getting a new chow chute put in so that he can get meds that were due almost an hour ago. Today we’re looking forward to a visit from a Neuro-Radiologist for an understandable explanation of Saturdays MRI but it is a holiday so if he’s on the same kind of schedule that STRICU payroll nazi’s are we’ll see him when he’s good and ready and not a minute sooner. (Inside joke: Susan is the aforementioned nazi and her work schedule makes banker’s jealous.) Odds are he’ll be here tomorrow. Thanks again for all your comments and support. The advice has been invaluable. I never new my family was so smrt, oops, I meant smart.
Hooray for Charlie. Today has been w/o doubt Charlie’s best day at Primary Children’s. He has been so good. Slept mostly, but even when he has been awake he hasn’t gone crazy. He might cry and grunt or posture a little but nothing like days past. The coolest thing is that when he is awake he seems to be much more alert and even opens his other eye for a change and his vitals stay steady and don’t go through the roof. We are starting to see other small steps also. He’s not as stiff or spastic as before but whether that is him improving or the drug levels being appropriate we don’t know but right now I don’t think we care we’re just happy w/ the result. Every day here in the hospital the Doctors and RN’s review Charlie’s neurological condition and one of the things that they do is the old shine a light in the eyes trick to check his pupils and normally this phases Charlie zero but tonight he actually flinched and squinted his eyes shut. He didn’t like it. It wasn’t a big thing but it was a change in response. We’re hopeful that these little improvements will continue. None of us are expecting Charlie to just wake up and be fine but we are praying that his little thinker will keep on repairing/rewiring itself. This is a long road ahead of us and tomorrow may be completely lousy but if we’ve learned anything up to this point it’s that sometimes you have to take a few steps back before you can take one ahead. Charlie has an old Norwegian proverb that is in his room back home and thanks to my sis and an old High School friend they made a similar sign for his hospital room; “A hero is someone who holds on just a minute longer.” Charlie is my hero.
Dr. Lamb came by at the same time as the ID Dr. They feel that the newest MRI did not show abscesses and that the enhancing areas on the scan were probably necrosis (cell death). I told her I felt like that was worse because abscesses have the possibility of reversing and necrosis sounds permenant. She disagreed because from an infectious disease viewpoint the last thing they want is more infection. Dr. Lamb said they would like to review the scans with a pediatric neuroradiologist. They have set this up for Tues when Dr. Headlan is back at work. They forgot to increase the Baclofen yesterday so they will be trying this today and if he still doesn't calm down they will increase the Clonadine again tomorrow. Dr. Lamb said she still wants to order a visual evoked response test to see if his brain is registering visual stimuli, also she wants to do a swallow test next week sometime. She thinks we may be able to internalize the shunt sometime this week.
Another restless night. I think this is getting to be a habit for Charlie. He had a fever and grunted/labored breathing off and on throughout the night. He was sweating so much that the nurse had to change his IV bandage in the early morning. Another resident came by to check him out and I asked her about the MRI. Her interpretation of the impressions was a little different. She said "it didn't have any abscesses so they will stop the vancomyacin and the brain is at the progression they would expect." She said Dr. Lamb will go over it with me later today. The good news so far...no more seizures, he is opening his right eye a little more than ever before with the help of raised eyebrows.
The resident just came in to give results. Since she isn’t very familiar with Charlie’s case and she is not from neurology she isn’t able to answer what it means for him just what the radiologists have written. So here it is...“No abscesses seen only cysts. Progression of brain atrophy.” I asked if they can tell on an MRI what is inside the capsule to distinguish between an abscess and a cyst. She said they can by the difference in color. Different substances show up differently on an MRI. As far as the progression of brain atrophy she didn’t know if that is an ongoing process with meningitis or if that is an unexpected finding. She said neurology should be by tomorrow to help explain it in the context of Charlie’s case. I don't really know what to think of these results. I guess I wonder what we thought were abscesses on the CT scan are really cysts all along. Would that better or worse or are they two different findings altogether? And I never like hearing of continuing atrophy. The scan was compared to one done on Feb 1st when he was still very critical so I hope that is wasn't significant progression.
Currently Charlie is a little irritated his temp is down but he is sweating. I don't know if he is sweating because he is working so hard to breath or if his body just isn't regulating very well. It seems to be going on throughout the evening. The nurse is going to continue the Tylenol/Motrin alternating schedules just to help with the irritation and she just gave him some Morphine. HR- 161 ---Angel
Well the resident obviously hasn't made it here yet, but I have loved the wait. I just spent the last hour holding Charlie for the first time in a week. It was so great. Since the drain was put in and he has been so agitated, we have felt that we didn't want to stimulate him too much. We were told that patients with brain injuries can only handle minimal stimulus. We keep the lights low in the room and try to minimized other things. He had been a little agitiated since he woke up tonight so the nurse said he might need his mom. I couldn't argue with that because I needed to hold him. I wish I could say he went right to sleep but he didn't. He fidgeted off and on for about 30 minutes or so but then slowly relaxed and has been sleeping pretty deep ever since. He heart rate never went above 160 so I figured I couldn't have been overstimulating him. It was quite an ordeal to manage all of the webbing that comes along with him (oxygen, feeding tube, IV tube, EVD drain, 3 EKG leads, oxy meter). But it was definately worth it. Since Charlie's sleeping I'm going to try to get some sleep too. I have instructed the nurse to wake me when the resident arrives.