Morning update...

Charlie had a fairly uneventful night. He mostly slept with a few wakes for meds, diaper changes and mucus suction. He had a great gag this morning at the 6:00 suction. The nurse and I were very impressed - open mouth and all.
Dr. Such-Neiber came by this morning and said that they are working on:
- Getting Charlie's meds grouped together
- Starting Bolus feeding (feeding all-at-once instead of continuous feeding)
- The ENT will be working on fitting his aids to see if he can tolerate something in his ears or maybe some hearing.
- She ordered a new kind of splint for Charlie's hands. They will be more like gloves. His boots are working great on his feet.
- The swallow test will be done today. that is putting fluid in his mouth while a live ex ray machine sees what is happening. We have seen him swallow some.
- She might have the test done again on his sputum to see about the flu results. She thought that it was "odd" to have it come back positive and she would like to see Charlie be able to leave the room for various things.
Charlie has been awake for 3 1/2 hours and he has been very calm and putting up with all of the pokes and probes from all of he nurses this morning. Now he has gone to sleep and resting peacefully.
I love that kid!!! Grandma Kathi
P.S. Rob, your friend, Dave, is Charlie's nurse today.

Found!

It is finally my turn (Grandma Kathi) to spend the night with our little guy. It has been a great afternoon and evening. Charlie has been asleep for most of it. He has had visits from two of Angel and Rob's school friends, Becky and Darin. And then of course the big visit from the UTAH Football players. Charlie was sooo... impressed. He loved the jersey and demanded to put it on right away. If anyone wants to view it, you will find it framed and hanging in Charlies bedroom.
About 8:30 I got to hold him for over an hour and we both loved it. Actually Charlie slept through it and I loved it. But 10 minutes ago the nurse came in to let us know that the test that was done on March 8th (when Charlie had the fever) and originally came back negative, was cultured longer and is in fact positive for the flu virus. So that is the reason that he had the fever last week and still has mucus junk going on in his throat and nose. Also, that is the reason that he is needing oxygen from time to time. Those coming to the hospital may need to put on a mask or gown before coming into the room just as a precaution. This is mainly to prevent the virus from spreading to anyone else. The nurse said that they may wait a few days to take another culture from his sputum to see what is happening. However, Charlie is resting well and does not have any sign of a fever. Hopefully this is the way the whole night will be.

Utes Ahead by One

Charlie just had some mighty big visitors. Two U of U football players, Greg Newman and Paul Krugger, stopped by to see how Coop is doing. They visited a couple of weeks ago with Rob, Angel and Charlie and from what I heard, there was a lot of bantering going on----Utes vs. Cougars. Well, today the Utes were the winners. These two players brought a full sized, official University of Utah football jersey, #67, with "COOPER" embroidered on the back. Even this ole cougar fan was impressed and excited for Coop to have such a great gift. When Charlie gets home, you'll have to come see how great it looks in his new bedroom. Thanks, guys, for giving your time, concern and encouragement to a sick little guy.
(Sorry Rob---but it's a really cool gift)

Cochlear Dilema

Charlie has done pretty well so far with the feeding tube in his stomach. He didn’t go to PT yesterday because they didn’t want him to jiggle too much for fear of aspiration or vomiting. His day involved (starting at 11:00am and ending at 4:00pm)
*Pulling the tube back from his intestines
*Going to X-ray,
*Waiting for results
*Doctor said it wasn’t pulled back far enough,
*Pulling the tube completely out through the nose
*Inserting a new shorter tube
*Going to X-ray,
*Waiting for doctor to say that it was too close to the opening of the intestines,
*Pulling the tube back some more
*Finally some food!!!
Charlie is OK missing a meal or two, because he is so chubby. Just look at his cheeks and double chin. He didn’t storm all day yesterday but then had two last night that each required Ativan.

Other things that are planned are repeat brain CT today at 12:00 to see if the ventricles have decreased after turning down the shunt. Speech therapy will be doing a swallow study Thursday at 12:00. We are waiting to hear if Dr Warren (ear surgeon) thinks it’s a good idea to do the cochlear implants now or not. The dilemma is that his cochleas are ossifying but the surgery is very expensive and a little risky so they are weighing the risk versus benefits. Charlie has to be medically stable and they have to think he will be cognitively capable of interpreting the signal. He is getting pretty stable but the second criterion is difficult to answer because neurologically we don’t know what he will be capable of. If his brain can’t interpret the signal then the cochlear implant is not worth the risk. Yet we don’t want his lack of hearing to hinder communication progress such as hearing and talking. Dr. Filloux, the neurologist, was consulted regarding this question. He said he couldn’t really predict what Charlie’s deficits will be although he is certain he will have some he doesn’t know if it would involve interpreting sounds. They will also be trying to consolidate Charlie’s nighttime medication so when we go home we don’t have to get up every 2 hours to medicate. We’ll see tonight how he likes the change (tranxene and Baclofen are changing tonight and then clonadine tomorrow night)

Good things I’ve seen lately- coughing more, sneezing, kicking both his legs (like an infant does), moving his head away when I try to wipe his mouth, eyes open more often, occasionally calming himself after agitated.

Photo Update :)

Below are all of the pictures I have taken in the last 4 days and haven't posted. I don't have any pictures of the new house because my camera stays at the hospital to document momentous occasions like suctioning and road trips. We moved in our new house yesterday and stayed there last night. I will post pictures soon but I can tell you that the house turned out better then I ever imagined because of everyone's help. It was such an incredible and humbling day to realize how much time and effort others have sacrificed in order for this to happen. Everyone had a role, whether it was watching kids, trips to the dump, muscling furniture, painting, building, fixing problems, cleaning, running errands, decorating etc. After everyone left last night Rob and I walked around the house in awe noticing something new in every room. Rob's family put a sign above our back door that reads "This House was Established 2008. Started with strength, finished with LOVE." I truly can feel love in every room of that house. It already feels like home, like we belong there and we owe it all to you. Thanks to everyone for making that happen. We love you!!!Thursday night the music therapist came by to see if Charlie would respond to any instruments. Bells, drums, guitars, beach sticks, ect. No response except to a drum that put off vibrations as well.

Rob checking out Britt's tonsils

Britt and Paige trying to play game cube- Neither one of them know how.

Paige and Charlie

These Nurses are awesome- Rob and I were High School friends with Becky (middle)

Today Charlie's new Ride was custom fit. It took all three therapists but I think we got it. Notice Coops pouting lip

Figuring out the headrest while he sleeps. This stroller/wheelchair even has shocks for 4-wheelin'

All strapped inI think it's cute that Coop's toes (right) are just like his Dad's (the second toe lays on top of the first)

Britt zoomed "Super Cooper" puppet doll in for a landing.
Britt wanted both "Super Coopers" tucked in for their nap on Sunday

All tuckered out

Busy Morning

It's Paige again. Charlie had a good night. He woke up at 4 this morning and had a little storm. He got his regular clondine and went back to sleep. His doctor came by at 8:30 this morning and ordered his NJ-tube get turned into an NG tube, which for all you non medical people, involved pulling the tube out a couple of inches so it is now in the stomach rather than the intestines. The nurse had to get a x-ray to make sure she got it in the right place. They also decided to adjust the settings of his shunt so that the ventricles will drain a little more then he will will get a CT scan tomorrow to see if it worked. They took an xray to verify that it was right as well. Grandma Cheryl has been here most of the morning and has been loving being with the little boy. Charlie didn't like the x-ray room but he seemed to calm down after he made it back to his room. Angel and Rob showed up to see and Meghan is here as well. It is quite a party. Here are some pictures of our morning adventures.

the paige is in...

Hi All,This is Angel's sister Paige and after a long battle with Grandma Cheryl, (there was definitely some hair-pulling and scratching involved) I got to take the night shift. Charlie had a fairly relaxing day, he slept most of the morning and did have a single storm until around 5 this afternoon. Whit was watching him and I think that any boy's heart rate would go up with such a pretty girl nearby. He was so excited he needed a little bit of morphin to calm him down. He has been sleeping, ironically, like a baby since his aunt Paige got here and hopefully we can both have a restful night. His oxygen has been a little low but the nurse said that the morphin will do that to him and she is watching it closely. Angel and Rob had an eventful day- they moved into their new house today and had all sorts of commotion. Everything is moved and it is just the unpacking that is left, a good portion of that is done as well. Britty got to play with his friends down the street all afternoon and didn't want to come home until he found out that all his cousins came over to see his new crib (that is the rapper version of crib- as now he has his very own big boy bed). We even had a visit from the budding superstar Dan Cahoon who graced us with his illustrious presence on his way to Nashville to finish up his first solo album. (how is that for a plug- if I had a website, I would post it here). Anyway, I hope Angel and Rob enjoy their first night in their new house (Britty decided he wanted to stay at Grandma Barlows so he could watch Power Rangers!) and I will update if there is any news-Goodnight!Paige

sleep, sleep and more sleep

Well this is Jared and its Monday morning and I stopped by to see Charlie and Rob had to do some work and run to an eye appointment so Jackie is spending the day with the little guy. So it sounds like he had a good night he continued the trend from yesterday and slept most of the night. The doc’s have been in and are happy for now with his medication levels so they are just going to watch him throughout today for any needed adjustments. He has not had a temp since yesterday morning and they have not seen any infection or bacteria in the cultures so far but they will still watch them today. He is going to they gym this afternoon. So sorry for any spelling or grammar issues but this is what you get from a guy who drives a truck for a living so let’s hope for a lot of sleep no storming and a good work out.

Sunday Night Update

The official update is that there is no update. Charlie has done pretty good today, slept a lot and got in some good quality time w/ the Principal while Angel was readying for the move. He’s asleep right now but he knows that his old man has the night shift so he should be up any minute and stay up for the remainder of the evening so that we can burp and tell dirty jokes. They did put him back on O2 this afternoon but he is only on 1/5th of a liter, how dinky is that, and he is “sating” nicely. He has had a few more sneezes and gagged a bit when getting suctioned but other than that his day has been oddly similar to the Runn’in Utes basketball season… uneventful.
Side note: My wife and Roxey are going steady. Roxey made Ang a mixed tape and they have a date planned to hit up the black and white photo booth at K-Mart. What’s next, mini-put at the 49th street galleria or promise rings?

Sunday :(

Charlie’s fever continued off and on throughout the night, however, it only got up to 101 and Mortrin brought it down. Around 5:00 am, his heart rate and blood pressure slowly began dropping. When they got to 58/24 (BP) and 102(HR) the nurse called the resident and he ordered a bolous of fluids to bring it back up. It took about 2 hours but they slowly have come up to a comfortable range. He also held Charlie’s favorite medication (clonadine) morning dose because it can cause low blood pressures. So far he hasn’t missed it because he is so sleepy. The first round of CSF results came in with no bacteria growth so far. They will continue growing it for at least another day. If they can’t find a source for the fever they may try taking out his PICC line (IV access tube on his left arm). It does not look red or inflamed but it has been in for 4 weeks. Good news= he no longer needs oxygen

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!!!

Channel Surfing