grandma's in the house...

While feeling depressed watching Sport's Beat, since the Y lost the game in the last few minutes, nurse Jenny was giving High 5's to Charlie. Both of his pupils were reactive to the light - she hasn't seen this the last three nights that she has been here. She said they are on the border of "sluggish to brisk." Great news!
Nurse Randa hadn't seen Charlie for 10 days and was pleased to see good progress, more voluntary movement and alertness. She was telling me that his diliated eyes and his discongate right eye could be a result of many of his meds. He hasn't had any storms for more than a day. He gets irritable but that is nothing compared to the storms. They tell me that irritability is part of his becoming more alert - so strong work, sweetie!
I enjoyed holding Charlie a few hours ago, but I'm not sure he cared for it much. Rocking such a precious baby is a blessing and a pleasure.Hope he has a peaceful night.G-ma Cheryl

Whats your Rancho?

My boy has been awake for almost 3 hours now and is calm, almost contented, wide eyed and relaxed. What a change from a few days ago when I saw him last. Throughout the night he was just as amiable, allowing the old man to get a ton of sleep. Charlie has had some great care from Jenny and Randa over the last couple of days. As we say on the Railroad they are true “Company Men” not the type of RN who works when he pleases in order to satiate a downhill addiction whilst neglecting his family and patients, Dave I hope the snow sucks and your edges are dull. The only real update for last night and today is that Charlie’s rancho level has improved one half step to a 3-4. I don’t know if the Rancho Los Amigos scale has been mentioned before in one of the billion previous posts but the quick run down is that it is a scale used to assess the level of cognition and alertness in those w/ dain bramage. 1 is the low end which is coma and 8 is a perfectly functioning noodle. If you want more info, google it. Charlie was a 2 for along time then for the past couple of weeks he’s been a 3, so dad’s pretty happy to meet some of the level 4 qualifications. It’s good to be w/ the little man again even if it is only for a couple of days. Big thanks to all of you for your loyal and uplifting support. Whenever things here at the hospital get crappy or slow we hit up the comments on the blog and read all the nice things from all of you who love this little guy and it brightens things up for us. Thanks

Strike Two

Looks like we still will not know if he can swallow due to sleepiness even without medication. Charlie was awake and mad from 10:00 to 11:30 but as soon as we were preparing to leave to X-ray he fell into a deep sleep. When we got down to radiology, I sat him up and he would fall back asleep while sitting so I held him and he fell asleep in my arms then we put him in this seat for the test and he fell back asleep there too. We even stretched his fingers out (which usually gets him to cry) and he only winced. They do not have any other openings today so we are put on the schedule for Monday. Hopefully the extra time will allow for more progress with alertness, coughing, and swallowing so he will be ready.

Quick Report

Not much to report. He was awake a lot last night however it was different than his regular storming cycle. His heart rate and blood pressure stayed stable but he just couldn't calm down to sleep so after a couple hours we gave Ativan. I haven't really seen the full blown storm in a while so they are definately improving. The rehab team is going to add melatonin at night to help with the natural sleep cycle and possibly decrease some of his day medication so he doesn't sleep all day. He is still really gunky sounding in his upper airway so he is being suctioned regularly and the swallow study has been re-scheduled for 2:00. That's all folks....

New Accessories :)

CT results from Syd were that the ventricles looked about the same. There was more fluid around the outside of the brain because they adjusted the shunt so they know the shunt is working properly and they know that it is not increased pressure that is causing the enlarged ventricles. So we are left with the cause being atrophy. At least we tried. They will leave the shunt at 80.

Charlie's new hearing aids came today. Actually the aids are borrowed but the ear molds are his. The Red is for the Right Ear and the Blue is for the Left. Dave the nurse did the football on his cheek.

Charlie has slept most of the day. First Jason Norby, the audiologist, came to fit Coop with his hearing aids. The first step is to get him used to the continual wearing of hearing aids then next Tuesday they will be turned on. They suspect Charlie won’t be able to hear anything but we are supposed to look for responses to any noises. Both Jason and Dr. Such-Neibar have contacted the surgeon, Dr Warren, regarding Charlie. There is a monthly cochlear implant conference where they will be discussing Charlie’s case (Mar 25th). Here are the questions they will be trying to find answers to.
1. Should Charlie be implanted at all because they don’t know if he will be able to interpret the sound due to his brain damage? Does the risk of surgery out weigh the potential benefits?
2. Should the implant happen now because of the ossification or should we wait a couple months until he is more stable and we have a little better idea of his alertness may be? Also, hearing can return in meningitis patients up to 6 months after diagnosis, although we are told that in Charlie’s case it would be the difference from severe hearing loss and marked hearing loss.
3. If they decide to implant now, insurance companies usually only pay for one ear but the other will ossify so do we fight to get a second one now too?
4. If it is implanted do we wait to program it (turn it on) until he settles into a calm routine and then re-introduce sound or do we introduce sound first then calm him with sound as a stimulus?

There are a lot of factors that go into making a decision. We'll wait to see what the experts come up with.

I have seen Charlie open his mouth a couple of times today so I asked the nurse if they had some binkis we could try. I was mostly trying to prep him for his big swallow test tomorrow hoping to encourage mouth movement. I forced it in his mouth and at first he didn’t like it but then he tolerated it and finally I think he chewed on it a little. He never pushed it out or sucked on it, maybe because he hasn’t figured out his tongue yet but he was at least chewing on it. BTW- he has not had any more teeth come through in the 6 1/2 weeks we have been here.

Grandma Cheryl holding CharlieTaking a bath
Didn't like sitting or getting wetGetting weighed (in kg)

Nice and warm again

FYI

I got to the hospital today in time to go for the swallow study at 12:20 but Charlie was too sleepy to cooperate due to his 12:00 meds so we didn't even get him in the machine. It has been postponed until tomorrow around noon and we will hold his medication until after the test. We also have not heard official CT results although our friend Darin in CT said he thought the ventricles looked the same :( but the rest of the brain looked better :)

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