Come out, come out wherever you are...

Sorry for the delayed post but I have been gone most of the day while Aunt Paige (from Pheonix) had some bonding time with the little guy. Charlie had several tests done today in order to figure out this dang fever. He had his blood cultured, snot cultured, and urine cultured (which involved a catheter), all of which were unpleasant and came back negative. So, that only left one more fluid in his little body to culture---his brain fluid (CSF). The neurosurgery resident came in and inserted a needle in his head where the tube comes out to get a sample. It didn’t seem to hurt Charlie very bad because Rob said he just moved his feet. The first report is that it looks clear (if you watch “House” on TV clear means it’s not infected- but as we have found out this is not necessarily true in real life). She also mentioned that the pressure must be OK because the fluid just dripped into the syringe slowly. We will take any good news no matter how small---right? We will find out in the morning what the gram stain looks like and then they will culture the sample of fluid for the usual 48 hours. His oxygen has been dropping a little so he has been put back on 1L of O2 through a nasal canula (tube in his nose) instead of the blowby (funnel shaped thing by his head). The respiratory therapist was called in to do a more thorough suction and she said he has a weak gag reflex and even coughed some. His coloring is a little paler and he has been sleeping a lot. Good news is that he has only had one storm today because he has been so sleepy and all the tests so far are negative for infection. Bad news is the tests so far are negative for infection and he still has a fever. I was really hoping to find an infection elsewhere so we didn't have to look in the brain.

Poor Charlie :(

We had a great evening last night, just the two of us, which consisted of diaper change, getting peed on, which led to a sponge bath and lotion application. When I applied lotion to his kneecaps he moved his legs as if he were ticklish and when I tickled his thighs he moved his feet. It was totally cute. Then I rocked him for a couple hours while he slept. I loved it! However, at midnight his heart rate slowly kept creeping up and up (highest I saw was 202) despite appearing to be asleep. The nurse took his temperature and it was 39.9 (103.8). She called the resident and they said give alternating doses of Tylenol and Motrin and they would assess him in the morning. So something is up with my little guy. He no longer has his cold symptoms that he had before (nasal congestion) so I’m not sure if this is a continuation or something new. Fever usually indicates some sort of infection. The nurse said they would probably test his blood, urine and possibly another X-ray of his chest. I’ll keep you posted as I find out.

(I was told before sugery that and an unexplained fever could be an indication of shunt problems so I hope we find a reason for the fever)

More Results :(

The ENT resident came to tell me MRI results of the ear and there is evidence of ossification. He had not yet reviewed it with the radiologist or Dr. Park (who is out of town for one week). So this means we will need to make a decision regarding the cochlear implants sooner rather than later. We had planned on deciding in the next 2 months. I asked what the timeframe is and he would recommend implanting as soon as Charlie is medically stable. They are able to do cochlear implants with ossification but it is a more challenging procedure.

Test Results

After Charlie came back from MRI at about 1:30 he was sent back down to get an x-ray of his shunt. His shunt is programed with a high powered magnet so every time he gets an MRI he will need to have a x-ray to make sure his shunt is in the same level of drainage. That was a good pick up by our nurse Helen. Syd from neurosurgery said his CT looked the same except that the air pocket that was previously there is gone (good news) and the ventricles look the same as before. She will discuss the test with Dr. Brockmeyer but from their perspective the shunt is working properly so they will probably not change anything. We will not get the results from the MRI of the ears for a while since Dr. Park (ENT) is out of town and will have to view it remotely. The X-ray of the shunt also looked fine so there is no need to reprogram the shunt. Because he was in radiology so long he recieved his 12:00 medication two hours late so since he got the medication he has been totally asleep.

PS= Last night Roxey and I saw him sneeze (twice actually) for the first time in a long time. I don't know if that is a reflex related to his cold or if he is becoming more alert but I thought I would mention it.

More imaging

Charlie's tests were postponed until 11:30 today. I was able to watch the brain CT and the ventricles looked just as big as last time to me. Then he was off to get the MRI of his ears. The anesthesiologist wanted to make sure I understood that sedating Charlie is riskier than a normal child due to his already decreased respiration abilities (labored breathing and inability to gag/swallow appropriately) He thinks it may take him up to a week to recover and he may need to be put back on oxygen or re-intubated. He hopes not but there is a chance.

Darin Onley (fellow WX Wildcat alumni and friend) made sure Coop was comfortable for the CT. We are still waiting for him to get back from MRI which takes about an hour

Run Forrest! Run!

Charlie’s ankle braces were delivered today. So instead of PT he was fitted with his splints. (No PT pictures today- Sorry Meg) They are so cute and remind me of Forrest Gump. Because he wouldn’t keep his casts on his feet he was fitted with splints that can be adjusted or removed when he gets agitated. The straps are tightened to pull his foot into a tighter flexion.
Coop also had a chamber hearing test where he was inside a see-through sound chamber and the audiologist applied different levels of sound and looked for any behavior changes such as starting or stopping his cry, looking around etc. The tech that went with Charlie said that during the low-pitched sounds his eyebrows lifted like a startle. However it must not have been consistent because when Dr.Norby came to give the test results he said it showed “no response”. So we are going to proceed with the hearing aid trial (see picture above for hearing aid ear mold) and then cochlear implants, although we found out today that most insurances only pay for one ear and it is only approved for children one year and older. So we will be starting the appeal process now while we go through the hearing aid trials. Tomorrow is a big day for the little man. He has an 8:00 appointment for and MRI of his cochlea for audiology then off to get a CT of his brain for neurosurgery. Pray for smaller ventricles than last time and less atropy. I hope Charlie behaves tonight for his uncle Jared tonight.

RSV… syke!

Last night they ran a virus panel to see if Charlie had RSV and initial indications were that he did. They moved all his medical stuff out in the hall and the nurses had to gown/mask up every time they came in like they were dealing with something bubonic. We thought “oh well, what next?” but in reality Angel and I were almost un-phased by it. The way I look at is when you’ve got a child whose knuckles are sore from knocking on deaths door and he’s got some pretty bad dain bramage the news of a virus has about as much effect on you as a fart in the wind. Maybe the reason for our lack of amazement was that the initial indications were about as accurate as Landon Clark every year telling me how great the Utes are going to be. (Undefeated when they play the Coogs every season) So, tests came back this morning negative which caused some amazement to the doc’s because according to them its quite uncommon for a tyke to be in the hosp. this long and not pick something up that proves to be caustic. He slept like a champion last night. My buddy had one storm that required intervention then back to sleep, credit given entirely to our RN who put Charlie’s father directly in his place. I was humbled and made fully aware of how archaic my methods of extruding nasal waste are. I watched, much like my wife watching motorcycle jumping on New Years (http://encounterthegrizz.blogspot.com/2008/01/do-you-have-rag-for-gas-cap.html), in complete amazement as she worked her magic. I was the grasshopper watching Mr. Miagi work wonders on my boy’s sinuses. Her methods, while quite arcane, were ingenious. Several types of suction, lubricants, solvents, negative pressure and myriad implements helped in liberating Charlie’s beak. Wonderment. The remainder of the A.M. has been un-impressive as he has been quite calm and/or asleep for its majority. His schedule should be productive today with 2 PT sessions and a trip upstairs for his final hearing tests. Thank you all for your continued support as our little man fights on, you all are great.

Charlie has a cold :(

Dr. Terry Such-Neibar (I have been spelling it wrong the whole time-sorry) came in today and tested Coop’s gag reflex. She pried his mouth open and with a tongue depressor scratched the back of his throat. He had a slight gag response although it is delayed. Terry said it is a good sign that it is present because it may be a sign it is returning to normal. Of course, there are no guarantees. However, a delayed response does not protect his airway anymore than no response because if he vomits he needs to gag at the same time so it does not get anything into his lungs. She has ordered a swallow test today where they put something in the back of his mouth and allow him to swallow and see what happens. I’m interested to see how they make a child swallow when he is not alert. She has ordered a chest CT for today instead of Friday to see how his lungs look since he has been having a lot more mucous and his oxygen is down a little. She is also going to pull his NJ-tube (the feeding tube that goes from his nose to the first part of the intestines) back into a NG-tube (go from his nose to his stomach). See picture above. This is a little more risky because if there is food in his stomach he can easily reflux and if his gag does not react the food could go into his lungs (aspirate). So when that is done we are supposed to watch him closely for any signs of vomiting or reflux.

Audiology wants to repeat hearing testing after all fluid in his ears has dried out to verify results probably right before we go home. They said that hearing aid trials can actually do further damage in certain situations so they would rather repeat testing instead of trying hearing aids. We will be going up to their sound chamber tomorrow to test any behavioral reaction to sound. For this test he needs to be awake and they will apply noise in the chamber and watch for any physical sign that he can hear.

Addendum: The results of the chest CT came back as no fluid in the lungs. One side has a little less volume capacity than the other but that usually returns when he starts feeling better or sitting up more. We will have a member of the Pediatric team come take a look at him to see what they would recommend. They could possibly suggest a steroid treatment to help him breathe better or humidifier. Since he isn’t coughing he is not able to clear his own secretions. Right now his lungs sound and look fine, but because of the gunkiness (yes that is the word everyone is using) we are not going to pull his feeding tube into his stomach until after he feels a little better.

Moonlight Sonata

Last night Char had his best night yet with his old man pulling the night shift. He fell asleep like normal around 2230 and instead of waking up grunting “Master the Tempest is Raging” at midnight he just kept sleeping. Dad likes the bigger 10 o’clock dose of neurontin. He finally stirred about 0130 and was wide awake for about an hour and started into a mini-storm and a touch of ativan later he was asleep for 3 more hours. Woke up from that blessed nap about 0530 and off he went straight into the “1812 Overture” w/ a big one that meds didn’t do much for so dad got desperate. It was snot extraction, cold towels, fans, chair, holding, and pillow, all of it and then O2 sats hit the crapper and oxygen was administered. I blame myself mostly for both its severity and duration because my previous booger patrol was sub par, marginal at best, and I missed one. After a second pass we successfully remove the earthworm like blockage and breathing eased and now he is asleep. A lesson was learned this morning. Boogs can’t be left alone, so mothers of the world when you child has his finger up to the second knuckle let them be. They might just be saving their own life.

ZZZZZZZZzzzzzzz

We had a visit from Dr. Park (ENT) for hearing and he said we should get the MRI of Charlie’s cochlea this Friday when we do the brain CT (for neurosurgery). He also said that if the MRI does not show ossification then there is not as big of a rush for the implants. He said that some hearing can return in the first 6-12 months. So it’s a hard decision to make. Do we give him time to recover as much hearing as possible over the next few months and chance ossification or do we start the process of implants? The implant process can take a couple months to go through all the steps. He recommended we contact the Department of Health and borrow some hearing aids to try so they can retest his hearing to see if simple amplification changes the results. Gather as much information as possible with the MRI, hearing tests, hearing aids etc and make an appointment with Dr Warren to discuss implants in the next month or two. If the MRI results show ossification we will need to make decisions sooner.

Dr. Such-Nibar made some adjustments to medication scheduling today so hopefully he will sleep more during the night and awake more during the day. Rob will find out tonight if it works. We had a second session of PT today with Janine and Charlie was very sleepy and fell asleep in every position he was in.

Sleeping through his workout

Exhausted!

Still sleeping...

Another rough night but a good day :0

From what Grandma Cheryl said it was another rough night. It seems as though a good calm day has its nocturnal consequences. So if you see Cheryl today and she seems a little sleepy you’ll know why. When I arrived this morning they were off to the gym for Occupational Therapy with Neale. It’s my favorite part of the day so I followed. Coop worked a little more on trying to lift his head and bearing some weight while in a standing position but was not as cooperative as yesterday. Since he is so little he has to choose to initiate the muscle movement otherwise the therapist is just doing range of motion/stretching for him. At this age they can't follow commands even if the brain were functioning normally. So today he wasn’t choosing to help as much as yesterday but it is still good to go through the movements to help him become aware of body. At the end of the session she put Coop in a sling swing that really calmed him down. He actually had his eyes open for quite a while and his breathing slowed down. (Progress I hope) I think he likes how the swing cradles him all around and has very smooth fluid movements. It is also helps children become aware of movement (vestibular) and comfortable with that sensation. He then fell asleep and we were able to bend his legs and arms. I think I’m going to need to learn to sew so I can have one at home- or better yet ask Grandma Kathi to do it.(hint, hint) And Jared will have to tell me where the support beams are in our house so we can hang it. I’m really excited that we have found something that calms him down besides medication!!! Yea
PS- He was so calm that the therapist and nurse are letting him stay in the swing while they have staff meeting in the gym. So far he has been in there for an hour and a half just slightly swinging.

Smooth Sailin' :)

I apologize that our posting is becoming less frequent but it is only because we have nothing new to report. Our nurse (Dave-who really hates Nascar-to set the record straight) put the K2 logo on Coopers feeding tube tape (picture above). He had a great day with lots of sleeping and two sessions at the gym (one with PT and one with OT). I love to see him try to use different muscles. In the second session with Lisa he worked on lifting his head by himself. Today is really the first time in a month he has had to try lifting his own head and it is really heavy. He can lift it a little if he has his arms supported on a table in front of him. Coop also was supported while standing and did put a little pressure on the ground to help.

Snot Patrol :-)

More of the same for the King of Neuro-Trauma last night and Charlie did ok too. Two storms last night but not bad like some of his others. However, early this morning I had the odious task of booger removal because he was having some issues w/ breathing and O2 saturation and oddly enough I took a certain degree of pleasure in the extraction of said snot. Two cigarette butt sized boogs later and lil C was breathing freely and fell asleep. This morning we met w/ one of the ear, nose and throat Docs and he had some good info about his Cochlear implants. Apparently there isn’t as big a rush to get them in as they initially thought. He’ll have an MRI later this week to get a better picture and go from there. Charles had a little PT Session w/ Neil this morning and did really good. He sat and knelt, laid on his face and got to fall asleep w/ his momma holding him. All in all a good morning and we hope it will all lead to a good day.
Side note: One of Charlie’s Nurses is a guy named Dave and while I was watching Jeff Gordon turn his car into a crumpled soda can in the NASCAR race yesterday he came in and let us know what a HUGE race fan he is. He told me all about his love of horsepower, trackbars, wedge adjustments and restrictor plates. In general, how NASCAR is his life. I am so glad there is a fellow red-neck here at PCMC, thanks Dave!

Sunday afternoon

We have had a lot of people ask if he ever opens his eyes because we never post pictures of it. One reason we don't put many open eye pictures is because he doesn't look the greatest.

Last night was pretty much the same. He had two storms, one of which required additional Ativan. He had a diaper blow of vesuvious proportions at 1:00 am like I've never seen before. It took 4 of us to clean him up again but I hope it made his tummy feel better. Today has been about the same as the night- a couple storms- long duration but not as severe. Dr. Such-Nibar came in this morning to see how he was doing and said some of our goals are 1-stabilize the storms (by adjusting medications or hopefully he will stabilize his brain so he doesn't storm as much) 2. Get results for hearing test, possible hearing aid trial, consult with ENT surgeon 3. Down the road-get the g-tube or j-tube inserted. Rob and I have spent an enjoyable Sunday together. Britt came to visit and we attended the hospital sacrament meeting with Troy and Andrea Chilton. Now Rob is watching NASCAR cussing at the TV because Tony just wrecked.

Good News: Jada is heading home!!!

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