Saturday

Today was a pretty active day for our little buddy. He has been awake for most of the day and when he is awake he tends to storm more frequently. They are not as severe as they have been in days past but definitely more often. Charlie's Dad is starting to wonder if this isn't just his routine while awake. The posturing and breathing is still as rough as before but today he seems to be looking around a little more. Still not focusing on things and his pupils are still kinda slow. Right now his BP is in the 150's and we're all happy w/ that because it's staying there while he's awake. Yeah! Normal for a baby his age is 120-130 bpm.
Big thanks to the Ward over at the new house for sustaining the fellas working over there today. Thanks also to the fellas for working so hard, Angel and I are continually amazed and Steve, Jared sent me a picture of the fireplace and I have to admit that I was a little turned on.

FYI

I realized that we never said where Charlies new room is. Duh! He's in the Neuroscience Trauma Unit, 2nd floor, pod C, Rm 2018. There, now you can find us.

Relaxing morning :)

Rob went to the hotel to get some sleep after staying the night with Coop. The little man has had a relatively calm morning since I've been here possibly due to the extra Ativan. The nurse checks in periodically and the weekend attending Dr (Dr.Glasgow) also came in to assess him. She said that we have a lot of things to work on. First, we need to get these storms under control, so she is increasing the Baclofen to relax his muscles a little more. Then we will be able to focus on rehab including physical therapy, occupational therapy, hearing testing, and eye sight testing (probably on Monday). When the Dr. came in and checked him over he did open his left eye and gazed in her direction, however, it still doesn't look like he is focusing. At the care conference they estimated we would be here for 2-4 more weeks, but we all know that time frame is up to Charlie.

I hear Britt is having a great time in Disneyland. So far his favorite ride is Pirates of the Caribbean. I can’t wait for him to come home tonight so I can hear all about "the happiest place on earth". Now that we have moved out of the
PICU Britt will be able to see “Jack Jack”. The hospital has a program where they talk to siblings about the tubes and machines that little Charlie is on so Britton won’t be frightened. I think it has been tough on Britt to not be allowed to see his little buddy for two weeks. We will probably bring him in after pre-school on Monday.

PS-Meggie-Thanks for the baby legs. I know Charlie loves them!
(posted by angel)

Charlie's World :-(

Our little man was a naughty boy last night. He once again wanted to show all the Dr's who said that his "Storms" would get better that this is Charlie's world and they just get to live in it. He started into one about midnight and it turned into a whopper that lasted until 0230. They gave him all the usuals but it was the IV ativan that finally did the trick. The Rn's and Residents thought Charlie was pretty cool because they had never seen a thalamic storm, only heard about them in class. He had an encore from 5 to 6 but not as bad and he mellowed on his own.
The Neuro-Trauma unit is a different world from the PICU but I think we'll like it. It's like moving from New York to DeBeque. The biggest thing is that it's quiet here and there is a window.
Huge thanks to Aimee, Fred and the crew of Café' Molise for the night out! Why have we not eaten there before? It was absolutely fantastic and Angel finally found bread pudding that is better than her mom's. You guys are great.
We also got over to see the Herculean effort going on at the new house. I can't wait to move in. If you haven't been to see all the hard/charitable work that has gone on there you need to make a trip. All of it is so much more impressive than this part-time carpenter could have ever done. Thanks to all of you.

Friday night...........

Well, Grandma Kathi and Auntie Susie are holding down the fort tonight. Angel and Rob have kept quite a vigil at this hospital. We peeled them out of here for a few hours and they headed to Fred and Aimee's resturant. This was a MUCH needed 'out' so a great big thanks for the generosity of Cafe' Molise.
Charlie has had a pretty good day. He is having more frequent storms but they are less severe. Charlie has graduated from the PICU (YEA and not so YEA) and he is now in the neuro trauma unit which is right next to the PICU. He has is own room and so his guests are very comfortable. There are lots of new doctors and nurses to get to know. Auntie Susie thinks he looks a BILLION times better than he did a week ago. Grandma Kathie said he is less rigid and much calmer than he has been. YAHOO! Hopefully we are on the path for a good night! Keep those prayers coming!

SUUUEEEEEE!

His last storm is under control. Only and hour and 15 min. Now that we are getting a better grasp of what his patterns are they are getting more comfortable w/ the idea of moving him to the Neuro-trauma unit but Charlie isn't happy w/ the idea so he has relaxed himself to the point that his blood pressure is going in the tank. So, while they try to regulate that we'll hang tight for a bit. Yesterday when they wanted to move him he started screwing w/ his oxygen sats. I think he likes it here and doesn't want to leave because he has a crush on his Resident. Char has developed a certain affinity for a Hog farmer turned M.D.. Shannon Cox (pictured above) from DeBeque Colorado has swooned our little boy. Who doesn't think that girls from towns of 114 where your mom is also your aunt isn't hot. I see a movie for the Lifetime network coming soon, "Greased pig country bumpkin has given up the overalls for a white coat and stethoscope." In reality she has been great and we know she'll have a great career ahead of her. Shannon thanks for all of your help and making us feel comfortable at our new home away from home. Is your husband jealous that Charlie has the hots for yah? Don't let your pigs sweat and say hello to your dad/cousin for us.
P.S. Bronco's Suck!

Ups and Downs

Apparently we are not to the point where we can have two good nights in a row. Charlie had 3 storms last night and now with all the docs up in his bizness for morning rounds he is whipped into another one. This one is pretty long so Charlie is slowly getting the full cocktail of drugs to knock him out of it. I took a chunk video of one of his little storms and as soon as I figure out how to upload it i'll put it on the blog. It's so sad to see him work so hard. Other than that no changes, still no improvement, YUCK.
Ps. meggie if you want a little more Wildcat pride the Chill-weed put "The Den" video on youtube.

Today was Good :-)

Charlie had his first full PT (Physical Therapy) session today and it went splendidly. They worked him over for about an hour and he was able to handle everything that they wanted to try. I was certain that all of the stimulation was going to put him over the edge but he proved me wrong. His heart rate got up to the 180's but it was a far cry from the 220's. Later this afternoon he had another storm but not as severe as before and it only lasted about 30 min. He's sleeping now and were hoping that he'll stay that way for a while. Today they also got all of his meds except morphine and antibiotics figured out so they can give them to him by mouth or by tube in Charlie’s case. The biotics and narcs still have to be given via IV. His "tone" has improved today and he's not nearly as stiff as he has been but this is largely in part to the new meds. Ya'll are great and thanks for the words of encouragement. We needed it.

Your Prayers Worked :-)

Now Charlie did have a good night but I'd like to know who of you out there prayed that they would keep him loaded/snowed, because it worked? We were very fortunate to have a super RN (Sue) last night and was very proactive in medicating the storm at the earliest signs so that he wouldn't get so wound up. This morning has been pretty mellow, he had one "Mini" storm but it only lasted about 20 min. Angel and I had our 1st "Care Conference" w/ the PICU staff. We had kind of prepared ourselves to hear the absolute worst case information. My dear sweet bride in true Wife/Mom list making fashion had a litany of questions that would make a Mensa cringe and for the first time I was grateful for it. Generally I abhor anything that even looks like a list because the way I see it a list from the wife isn't a group of things that could be accomplished it's merely a plethora of ways that you can fail to meet expectations because you didn't do it in the order/way that you should have. BUT... in this case her list of questions had the Doc's spewing way more info and answers than we thought we'd get. Here's the nitty gritty. GOOD: 1. His survival rate at this point is very high. 2. They also expect these storms to subside w/ time. 3. His brain stem appears, from his last MRI, to be in good shape. 4. No recent seizures. 5. His brain is only 9 mo. old and still has some maturing to do. 6. Lastly he's not nearly as rigid and the Rx's seem to be managing things. BAD: 1. He's had his egg scrambled pretty good and he isn't improving neurologically and isn't alert. That is the Neurologist's biggest concern. 2. His healthy brain stem doesn't match his clinical picture. 3. His breathing is still pretty labored and no real cough or gag reflex and a tracheotomy is still on the table. 4. From his MRI it is most likely that his damage is in the areas of the brain that control motor functions, cognition, speech and the overall communication of both sides of the brain. 5. A "G" tube so that he can feed himself is in his near future. 6. Wheelchairs, walkers and Mini-vans are all strong possibilities. 7. He will be at increased risk for pneumonia and respiratory infections for the rest of his life. 8. There is a high likelihood that while he'll be able to understand things he won't be able to interact or express himself. 9. "We just don't know" and "Time will tell"
We will continue to hope and pray and we urge you to do the same. Any of you that have come to see Charlie know how hard he is fighting and that he's not going to give up and I'll be damned if I will.

In Case Your Wondering About Britty!

Before Charlie got sick we had a cruise planned down in Mexico w/ the In-laws. (Because who doesn't love to vacation w/ the Barlow’s?) Angel and I were really unsure if we should let Britton go or not but in the end the fact that he's currently floating in the Pacific lets you know what we decided. I think it was the right choice because now Angel and I can devote all our time to Charlie and don't have to worry about what relative is pistol whipping the Green Ranger. (Just kidding meggie! http://mtwebb.blogspot.com/2008/01/sir-please-put-gun-down.html) So while Britty, Max and B-Low play pirate we are consigned to cruising vicariously through Annabelle's daily phone calls. Last night they had a Pirate dinner and any of you that know Brit can imagine that he was in heaven. Arrggghh. We miss him a bunch but know that he's having a great time.

Sweet Dreams Char :-)

Lets all keep our fingers crossed that Charlie will stay calm tonight. He has been a little better since his last "Storm" but whether or not that's due to drugs or exhaustion we don't know. They've increased a couple of meds to try and alleviate the longer storms like he had this afternoon. I wonder how much longer they can continue to go w/ the "Increase his dose" therapy. Lets all hope Charlie sleeps tonight, he's had a long day. I think his only good part of the day was being held by his mommy and grandmas.

Rough Afternoon :-(

We're not really having a ton of fun in the PICU today. Charlie was doing ok to start out the day and even let Angel and Grandma Cheryl hold for a while until he whipped himself into one of his fits. These are the fits that they are referring to as a "Thalamic Storm" are his little noodle unable to control the firing of neurons that originate in his thalamus. The firing is due to pain, fever, agitation, stimulation or being a stubborn Scandinavian and once the firing starts he isn't able to control it and it starts a chain reaction that we've only been able to control w/ meds. His last one lasted over an hour and a half and it isn't very fun to watch. Right now he's had tylenol, motrin, clonadine, methadone, 2 doses of ativan and morphine. So it goes w/o saying that he's pretty snowed. We hope it lasts for awhile. We are still very concerned that his neurological symptoms aren't improving so we are praying for his thalamus to chill out and give my little fighter a break. How long can my little buddies ticker hang out at 220 bpm?

Wednesday Morning

We are still in the PICU because Charlie continues to have what they are now calling thalamic storms and they want to get those under control before moving him to another unit. They have increased the Baclofen and his hands and feet are a little more loose than before. He has been calm all morning and I held him for a couple hours. He still is not opening his eyes much or doing purposeful movements. Physical therapy came by and assessed him. They gave us some exercises to do so his joints don't become too tight. Dr. Ampollo(Infectious Disease) came by and said they could take out his ART line to decrease the chance of infection. So now he is down to only one IV and a feeding tube. I am mostly curious about what the neurologist has to say. So far only the neurology medical student has come by.

Checking off the list :)

Our nurse today is all about action. She is in the picture below with Rob. Today she has sucessfully tapered off the Fentanyl, Sodium and presidex. She was the first one to mention that it was even possible for us to hold Charlie and then made it happen even though it was a mess of wires to put him back in the bed. I know holding him had a lot to do with having him extubated too. She has just removed his PIC line in his right arm. She also called 3 times yesterday to get everything scheduled for physical therapy/occupational therapy. We are checking things off the list left and right. We are now down to only 2 pumps on the pole where we had 8 only two days ago.

Tues Evening :-/

Charlie is continuing to cruise along. No worse for now. Today Charlie's Dad got his much needed therapy and was able to hold him for about an hour. It was awesome. The PICU is still tinkering w/ his meds and trying to titrate to a level that suits him. His posturing is still pretty bad and today he got a visit from the Rehab staff that will help him from here on out. They are some very nice folks and told us that while they are very concerned about his posturing, arched back clinched jaw they said that Charlie’s stiffness and posturing isn't the worst they've seen... "What?"... finally something w/ this disease that isn't the worst a Dr. has seen. What a blessing. He is a bit calmer today than he has been in days past but that is largely in part to the new and increased drugs he's getting. He is off his Fentanyl and Sodium and he should be weaned off his Presidex in an hour or so. They started him on Baclofen that is a muscle relaxer and that seems to help a little more w/ his posturing. He still goes through is agitation fits and then will sleep for a while. His breathing is really hard and all through is nose. They think that his "Neurological Insult" is causing his diaphragm not to cooperate and so he has to compensate by doing some pretty heavy belly breathing. The Dr.'s that weren't familiar w/ his case thought he should be re-intibated. He has been coughing a little more, yeah, and even yawning. If he is able to stay off the PICU delivered meds tonight it looks like we might move next door tomorrow to the Neuro-Trauma Unit where all the kids w/ uncooperative brains go. Should be interesting. The care in the PICU has been exceptional and we'll miss it.
Sorry for the lack of updates today but I just feel like we keep giving the same info over and over again and I don't want to bore. Thank you all for everything.
-Rob

Tues Morning :l

Charlie got very aggitated last night and it took well over an hour to calm him down. He gets so mad that his heartrate and BP shoot up, his posturing gets worse to the point where he arches his back and tenses up his arms and legs. This sounds like a seizure but they did a second EEG a couple days ago and found it is just the posturing. When he gets this mad his breathing gets very labored and looks like he can't get enough breath. It makes people very nervous when they first see it but he keeps his oxygen saturations within normal ranges so they usually just let him ride it out. Because he didn't calm down very quickly last night they ended up giving him a full dose of Ativan and now they have perscribed it for regular doses. The new infectious disease Dr and Neurologist came by and said they don't have anything new to add or advise. The decisions are now mostly coming from the Intensive Care Dr. We have several more steps to make before moving out of ICU. (He has to stop taking Fentanyl (pain), Presidex(sedation), Sodium. Currently they are slowly switching Presidex for Klonadine and weening the sodium and fentanyl down.) But we are slowly working towards it. He still doesn't have a gag reflex but he did cough a couple times yesterday which indicates he may be able to clear muccous from his airway.

View From The Waiting Room

Angel's Best Day :-)

Angel is in heaven, she got to hold Charlie for the first time today. I think it was something that both Mother and Son needed. Charlie met w/ his first Occupational Therapist today and got a little work out while they played w/ him. He'll meet his first Physical Therapist tomorrow and they will try their hardest to loosen him up a bit, that should be interesting. Other than that no real changes, he's kinda coasting along right now and he doesn't seem to get nearly as agitated as he did w/ his tube in.
On a different note Charlie got a great surprise sent to him today. He got a package from the BYU Football Department and the get well wishes of Coach Bronco Mendenhall. It had 4 hats, a ton of t-shirts, Cosmo's video and a couple of magazines. In retrospect this package may have been more for his dad but regardless I owe a big thanks to the BYU Football program and I promise to renew my season tickets. "Rise and shout the Cougars are out!"

So far So good :)

Extubation was a success so far. It was quick and hopefully painless. He had recieved morphine a while prior to keep him calm. His oxygen saturations are staying up in the 90's so there is no need for additional oxygen. There is a question of whether he will be able to clear his own muccous or not because of the part of the brain that is damaged. Charlie is the calmest he has been all day -low heartrate, low BP. So far the mucous hasn't been an issue and he's been breathing on his own for about 60 minutes!!! He does seem less aggitated but I don't know if that is related to the extra sedation or not. We are still waiting for physical therapy to come by and fit him with balls for him to grab so his hands don't clamp down so hard and boots to make his feet flex.

Monday Morning :-{

We reached out one week mark last night and Charlie decided to celebrate by having another seizure. Yuck. We had a new rotation of doc's come by this morning so we are begining the process of making new friends. The biggest concern is that from a neurological stand point he's not improving and seems to be stiffer w/ his posturing. They are going to try and extubate him today so we are holding our breath hoping that Charlie wont. The concern is that he doesn't protect his airway on his own. His gag reflex isn't the greatest but he has done well when they test his ability to breath on his own while still on the vent. They have also told us that if he fails his extubation it is not uncommon to have to be re-intubated. We're praying for no more seizures and less posturing and stiffness. Thanks again for all your support.

Hola from the Barracks :-)

I want to say thanks again for all the support and comments from everyone. We have both been so humbled. Tonight Angel and I had a chance to get out of the hospital for a bit and the first place we went was to the new house. Jared was there and I don't think he has slept in 5 days. Looking at him I see where the phrase death warmed over came from. We all looked through the house and were blown away. In the words of Kathi Barlow, "it's beyond-beyond" and while I don't know what that means exactly, I think its really good. In every room we went in I almost lost it, but I didn't because the first rule of brotherhood is you can't let the little brother see you cry. We could feel the love there and for the first time in the whole construction process it felt like home. Thank you all sooooo much for that. The hardwood floor is beautiful and the handrail is 100 times better than I could have ever made it and Doug and Jared the tile is stupid good, and John I told you to buy that Dap stock and I bet you wished that you did after seening all the caulking. I also am taking a certain satisfaction in knowing that my house is causing the davis county power grid to wane, so Wayne thank you. And I know that Jared didn't get all that stuff put in the garage himself so Biff, I owe you one. I owe all of you one. One final note about the house: I was made aware of a certain act of vandalism at my home so I am calling all Cougar fans to assist me in another work party when Charlie is out of the Hosp. in order to redo a small portion of the floor. Bradley Jay Short is public enemy number 1. Shortdog, no good deed goes unpunished, 17-10.
Charlie is doing ok tonight. It's like he'll rest for a bit and then go through is agitation routine, more posturing, for a bit. While Cheryl Dee and I were watching him tonight we noticed a small amout of blood on his drool cloth and they found that his jaw was so tight he was smashing his tounge but not that bad. The cliched jaw is another sign of posturing and the excessive drooling is not unusual at all, just a sign that both my boys might be a not too distant relative of Joel (dribbleboy) Taylor M.D. Luv ya Leoj. Charlie's fevers continue to come and go but usually associated w/ agitation. They are doing their best to try and limit the amount of stimulus Charlie gets so they've very politely asked us not to touch or disturb him for awhile. They also gave him some ear-plugs to try and cut down on the noise. Hopefully he can still hear! They also put in a small oral airway tube to try and keep his jaw open but he just pushes it out and our nurse Tina just puts it back in and in her cute South African accent tells him, "Now Charles some things here are not negotiable and this is a fireable offense." she's fun.
Now that we have moved from the suite down the hall to the ghetto it hasn't been all bad. They are so crowded they have had to put 3 kids in the space made for 2 all over the unit. The Charge RN said this is the most crowded she's seen the PICU in 14 yrs. Apparently Utah is having a super bad RSV season and I blame nursery at church, those rooms are like a petri dish. We've made friends w/ our neighbors and packed into our little corner. I guess this is what a prisoner feels like after moving into the general population. On the bright side being moved must be a small sign that Charlie isn't as critical and no longer needs the isolation room. I just feel terrible for the baby and family that moved into Charlie's old room and pray she's able to win her war.

Transition :-<

Nothing new to report today. We have just been trying to keep him relaxed so his HR stays down. There is a new admit that needs our spacious isolation room that we have become so comfortable in. We are now moved down the hall to unlucky 13 which is really just a space in a big room. Another transition we will be adjusting to is the change in staff. The doctors we have become so attached to will be going off service today so we will need to get to know others starting tomorrow. It's hard when you have gone through so much with one doctor to adjust but we will.

Sunday mid-morn :l

Good news= the spinal tap culture did not grow any organism. No new seizures. His pupils are about the right size for the amount of light in the room and they are closer to being equal than previously.

Bad news=Charlie is posturing more than usual. His respirations are faster than they would like to see and he did a funny breathing thing yesterday that His fever is still fluxuating. Both the Dr. Filloux and Dr. Osguthrope said they would have liked to see more alertness and less posturing by this time but he was a very sick boy. He probably won't be extubated until he has less posturing even though he is triggering most of the breathing. Now we just have to wait for little Coop to tell us when he is ready for the tube to come out. Every day we will readdress this question.

Sunday Morning :)

Well things are pretty uneventful here. Little Charlie was peaceful most of the night. He still gets aggitated every two hours when the nurses do their assessments and it is taking him a little longer to calm down after those. His BP and heartrate were an issue earlier in the night due to aggitation. He is taking faster breaths than the vent and due to that his CO2 is decreasing to 25-30. The Drs would like to keep it at 35-45. So they disconnected the ventilator to see if the respirations would slow down if he did all of it by himself. The CO2 was still low so they gave him a little morphine to calm it down. The seizure medicine seems to be keeping them under control and he hasn't had any more norepi for his heartrate. Yea!