A Day at the Gym with the Christensens

Britt thrilled to hang out with his little brother.

Rob desperately trying to teach Britty to balance...

and teaching him the ways of killer ball.

Britty only gets to play "hard" with daddy.

He loved playing on all of Charlie's rehab equipment and especially loved trying to crash into Grandma on the bike.

Coop was not hating the stander!

Britty being attacked by the tickle monster.

We know who is the better looking of the Christensen men!

Angel power lifting her big boy.

Beautiful baby boy

It might be working?!?

Mom and nurse Becca after the Farrell Valve was connected.

They hooked Charlie up to the vent tube about 5:00 p.m. last night. They started by having 40 cc's go through the NJ tube and 10 cc's through the GT tube which sends the formula into his tummy. The red extensions of the tube sends formula to his tummy or problematic stuff up to the vent. I was worried that he would have a tough night since he hasn't had food in his stomach for a long time. Good ole Char is doing fine. He slept from about 11:00 - 4:30 and has responded to the bum pats thoughout the morning. Right now he is getting half of his feeds through each tube. Holding him is a challenge since there are loops of tubes all over. All in all, he's having a good morning.
G-ma Cheryl

It Arrived :)

Coop had another possible seizure last night while Jared was rocking him. He gagged a little, immediately started sweating, eyes were wide open with a blank stare. It only lasted 5-10 seconds and then he was back to fussing. Neurology said he is already on 4 seizure meds so they aren’t going to change things unless they become problematic. Other than that, things were fine again until 2:30 when he woke up crying and could not be consoled until the Motrin kicked in at 5:30. When I talked to Dr. Such-Neibar this morning she was unaware that it could take 2-4 weeks for the tube to arrive so we made a plan to try to get everything in order to go home next Tuesday. We have an out-patient appointment with Dr. Warren(surgeon) and Dr. Norby(audiologist) to turn on the cochlear implant next Wednesday so she will try to move that to Monday while we are still here. Then an hour after we made these plans to go home guess what arrived…. the venting g-tube. Becca, our nurse, is finding out how to connect it right now.

PS to Troy=Rob is coming back today so he should be posting the whole weekend. I think I look forward to his posts more than anyone.

In Limbo

Grandpa Brian said last night went really well. Charlie fell asleep around 11:00 and didn’t wake up until 5:30. The nurse assessed him and then Charlie took a nap in Grandpa’s arms for a couple more hours. He didn’t have any more seizures and we still haven’t received the venting g-tube so it looks like we will be here at least throughout the weekend. Im getting bits of the story with the tube. I guess the hospital does not stock this item, possibly because it is new or rarely used and they would need to buy a case of 30 which is $500. Currently the hospital only needs two (one for Charlie and one for another pt in the PICU) so they have asked for 2 samples to be sent. Dr. Jackson called Material Management on Friday April 11th. Materials department called the floor on the next Monday to verify to order it and were told we no longer needed it. A few days later it was realized we were in fact waiting for the tube and it was ordered either Thrursday of Friday last week. Now for the kicker...it takes two to four weeks for delivery and there is no way to track it!!! So if that is true the soonest we would expect to see it would be a week from today. I'm not sure that Terry Such-Neibar realizes this part of the story because she told us Monday that she expected it to be here Wednesday. When I see her in the morning I'll try to clarify everything and get to the bottom of the story.

Since stopping the Miralax yesterday Coop has been crying less and sweating less. Maybe now that his sweating has decreased we can start dressing him. We just got back from PT where he was pretty upset so he didn’t do very well at trying to lift his head. Because he was mad already we tried the stander again and he was bugged but not totally ticked off. That has been our day so far.

last chance

so it's your last chance to sign up for shirts for the Brain Injury 5K May 17th. click the link on the right side of the page to make your requests. I need to have all the requests in by Sunday 4/27. And don't forget to go to www.biau.org to register for the race. we're excited about the race all of the support you've shown. -meghan

Sweet Potatoes :)

The day was better than last night. He has been relatively calm and very responsive to the bum pat. Yea! This morning we went with Janine to physical therapy/speech therapy. He tried a small taste of sweet potatoes with the same technique as the pudding yesterday. The fact that he didn't clamp his mouth closed is considered a positive sign. He is not opening his mouth and swallowing like a normal kid but when the therapist's finger is in his mouth with food on it he investigates it with his tongue. Because he hasn’t passed his swallow study we are limited to giving him a taste of something once a day. Janine said he is holding his head up a little again and is calmed with patting his bum, lips or chest.

Dr. Brockmeyer, the neurosurgeon, came by to let us know he looked at the CT and there are no changes. So there is not a good explanation for the breakthrough seizures. I also should have been more specific on the CT results from yesterday. I said they were normal and that is not necessarily true. Charlie’s brain will never be normal. I should have said “the shunt is working normally” because there is not any increased pressure in the ventricles. The CT looked like the previous scan – no change. Dr. Henrie stopped by on his way out and told me that Charlie’s seizure medication level is within therapeutic ranges so we will probably not increase his medication at this time. He also talked to neurology about the episodes and they feel the seizures are probably partial-complex because of the eye twitching. Either way they were not too excited about them and if they happen again we are to give Ativan to stop them and then check the level again. I told Coop that he had to continue to behave for Grandpa Barlow tonight.

Since Charlie has become a celebity he has had all of his cute girlfriends come to visit.Andrea and Ashley

Andrea and Jada Rose

Up Late :(

Roxey came to hang out with me at the hospital tonight and was on “bum pat” duty just after Jared left (around 11:30p). Charlie opened his eyes with a wide-eyed glassy blank stare, held his breath, limp body except for a single near lurch and pooped at the same time. He had beads of sweat immediately rather than his usual working up to sweating. This lasted for about a minute then he got a little agitated but calmed with the bum pat. We moved him to the crib to change his diaper and then got him comfortable on his side in case he threw up. Then his left eye started twitching to the left (nystagmus) for a few seconds and then stopped. His body never jerked or stiffened throughout any of these and vital signs remained normal (BP114/67). He had a couple more episodes of left eye twitching and one more episode of blank stare without blinking and then fell into a deep sleep (post-ictal). My impression is that it was an absent seizure. The whole series of events lasted less than 30 min. The doctor was paged and he approved the seizure dose of Ativan to be given but by that time Charlie had stopped so we opted not to give it. He is currently on 3 seizure drugs (although one isn’t being used for seizures) and they were given at 8:00 so I think we will be seeing Dr. Filloux (neurologist) tomorrow for another consult. Charlie has had seizures two other times during this hospitalization- first in the PICU when his brain was so swollen and then second when we had just transitioned to the neurotrauma unit 2 months ago. Both of these first episodes he was jerking and stiffening his body. I guess it’s a good thing we are still in the hospital. If we had been home we probably wouldn’t have been holding him while he was sleeping so calmly.

Morning Update: He slept from 12:00-5:00 and then was irritable due to gas. Dr. Such-Neibar and the resident Dr. Henrie came in to get the details of last night's events and tell me the plan. They will notify the neurologist and draw a blood level to see if his medication is high enough. She will also talk to neurosurgery about Charlie's brain CT from yesterday. It looked the same as before (ventricles are still huge, but not under pressure). Charlie is a little confusing to them because he is improving in certain things-controlling his head a little more, sucking, opeining eyes more- but degressing in other areas-agitation, seizures. Dr. Such-Neibar said that is not normally the way brain injuries go. But when has Charlie ever gone about things normally?

Sorry it took so long to post today.

As was said before, today started out pretty rough. Coop woke Jared up at 5 am with a scream that took a long time to stop. They tried every medication but Ativan and both the nurse and Jared tried the bum pat without benefit. The rest of the day he has flucuated with mostly agitation and some times of being content. His food has been digesting fine since we started the new formula and he shouldn't be refluxing since the feeding tube goes into his intestines. The team came in this morning concerned that he is having more periods of fussiness despite the fact that they increased both the neurontin and tranxene in the last few days and his bowel seem to be working fine again. One thought is that the Miralax may be causing stomach cramps and increased gas- which we have been noticing. So, tomorrow we will change the Miralax to a more mild laxative. Also, to cover all the bases, Charlie was sent down to radiology to get a brain CT to make sure his shunt is working properly because the increased pressure in his head could explain the fussiness. (Results came back as normal brain CT :)) The word from GI is that we should be recieving the venting g-tube tomorrow. I am told that it was re-ordered on Monday. Amanda Butterfield, Chris-the cameraman, Rob and Coop

Anni, Megie and Stephanie- Our supporting fan club

REHAB UPDATE:

Neale noticed yesterday that Charlie had started sucking a little so we tried a binky again. He sucked on it a little but not as much as when nothing was in his mouth.

Trying to get him used to different positions. He hates transitioning from one position to another.Neale found that patting his mouth has the same effect as patting his bum. When agitated he just melts and relaxes. I guess there are a lot of nerve endings around the mouth as well.Due to the increased sucking yesterday, Courtney, a speech therapist, said that may be a sign that he is interested if food. So today was pudding day for Coop.She put pudding on her finger and then pushed against his gums. He liked the gum pressure and did swallow some. The swallows were delayed and intermittent but it is a good sign that he didn't hate a flavor in his mouth after all of this time.

Not such a great morning

Well it sounds like coop had a good day after such a hard long weekend Angel said he was great and slept most of the day. He was awake when I got here but not for long. after his eight o’clock meds and a long day on the news and being famous, he was out. He slept great till about five this morning and hasn’t been so happy since then he has had some of his meds and a diaper change he is still ticked - he must want his mama to come back. but amber is giving him is clonadine now so let’s keep his fingers crossed that it does the trick.

So I just have to say Rob and angel didn’t really know what to think about this whole news thing but I think the same as all of you that they made the right decision. Amanda, I don’t know how you did it but you actually made rob look good. It was pretty neat to sit up here holding Charlie with all the nurses in his room watching his story. So l looked at the hits on his blog as his story started and in the next 45 min there were 1,200 hits so this just proves coop is the man and has touched so many of us, so thank you all for the comments and the support through this whole thing. it means more to our family than any of you will ever know. - uncle Jared

Dilemma...

Rob and I are fairly private people and so the proposal of TV has been a tough decision. My face turns red every time I think about it. I asked 10 people what they would do in our situation and 9/10 said they would go on the news. When asked why, there were very few legitimate reasons to outweigh the shyness and the invasion of privacy. Rob and I debated that the blog has already exposed us beyond our comfort level but when we hear everyone’s amazing comments we realized how beneficial it has been for us. How can we be the ones to stop him from melting your hearts as he has ours?

I accepted to go on the channel 5 news with Amanda Butterfield although second guessed several times afterwards. Rob has accepted to be silently supportive. Ironic isn’t it that he is so eloquent in writing and quite social in a casual environment and yet so shy in a formal setting. I’m terrified to make a fool of myself and yet reminded of what Susan has said throughout this whole ordeal “This isn’t about you or them, it’s about Charlie.”

I’ve heard that Charlie has affected many people’s lives in a positive way, many times without them ever being in the same room with him. This phenomenon is a little difficult for me to understand because pictures on the blog don’t do him or the feeling justice. I guess what I’m trying to say is that I’ve recently realized that Charlie wasn’t sent here just for Rob and I to learn from-although we have so much to learn- he is meant to be shared. No matter how much I would like to slip back in anonymity he has a story to tell. Although that story may be different for each person following him, he seems to convey all that is good- faith, endurance, peace, innocence, patience, toughness, determination. He has completely changed our family’s perspective and outlook on life. He has made us realize how fragile life is and not to take anything for granted. As I wonder if Charlie will ever smile again I find myself thoroughly memorizing Britton’s smile. I don’t think I will ever know exactly how but somehow Charlie is drawing people to him like a magnet and I guess we as his parents need to allow that to happen. We are so lucky to be a witness to what a small body can do with such a big spirit.

Rough Weekend :(

Terry wants to know why Charlie always seems to be more upset on the weekends and OK on the days she is here doing rounds. This weekend was really rough. He was so mad for most of Sunday that even the bum pat didn't work. We will hopefully be hearing from GI today and see if the venting g-tube has arrived again.

Not a Good Day :(

Charlie had a pretty good night but then an awful day. He has been on edge all day and can't seem to settle down. Even the bum pats are not a guarantee anymore. The only change we have made is take him off erythromyacin (yesterday) but he is still having a lot of gas and regular bowel movements so I'm not convinced that is it. The update on the venting g-tube is that the part was ordered over a week ago and delivered but was returned by mistake because the person who recieved it didn't know that we were still waiting for it. So it has been re-ordered and Dr. Jackson should be back on Monday so we are hoping to start progressing again. Visit from John and Amanda

Kelli giving the night-time meds- hopefully to help him relax

No News...

I know this is getting a little redundant and pretty soon everyone out there in blogland won’t have a reason to check in on us but we still don’t know when we are going home. Dr. Jackson (GI) has been out of the hospital all week and since he is not on call the only one that should contact him is Dr. Such-Neibar. So far they have not connected. As far as we understand Dr. Jackson still wanted to try the venting G-tube before extending his g-tube to his intestines. The venting g-tube was ordered a week ago but has not arrived. So I think we may be here for the weekend. I told the resident that Coop has had an increase in gas and it seems to wake him out of sleep. Since we will be waiting anyway we are going to try stopping the erythromyacin (it can cause stomach cramping) and see if it makes a difference and if Coop can keep his bowels moving without it. I think later today I will put him in his stroller and go for a walk around the hospital. He can be disconnected from his feeds for 4 hours a day. Rob gets back in town today from being gone all week so I’m excited to see if he thinks Charlie has changed at all. When you see him everyday it’s sometimes hard to see the subtle improvements. I wish I had more news/pictures to share but we haven’t had much action. And that’s just the way I like it!

Patiently waiting :)

Grandma Cheryl said it was a good night. We still don’t have an answer from GI but Dr. Such-Neibar said she might have to go to their office and talk to him directly. The other possibility is we go home and when GI can fit us in we come back for a night. She is anxious to get us home so we aren't exposed to any more hospital germs than necessary. Charlie is doing fine on his new formula in the NJ tube however he is producing a lot of gas that wakes him out of a sleep. I'm not sure if it is related to the medication, the formula or the fact that we are putting the food directly in the intestines, but it seems to bother him. He is gaining weight again and looks so grown up. He has lost the baby look and now looks like a little boy.

Waiting for GI-

He had a pretty good night, only waking up two times. He had a quick nap this morning after clonadine then woke up with quite a lot of gas. He has been a little fussy while awake but he does calm every time he is held with a bum pat. Today we are sort of in limbo while waiting for GI to make a decision. If we don’t see them today they are supposed to tell Dr. Such-Neibar what they think. The decision is to either try the venting g-tube or go straight to the g-j tube. I think GI is waiting for the supplies to do these options. In the meantime, I got a list of his current med list for those that are interested, see below
Methadone- pain-tapering off over the next 6 weeks
Miralax-stool softener
Zantac- stomach/reflux
Keppra- seizure
Baclofen- muscle relaxor
Prevacid- stomach upset/ reflux
Tranxene- calming, sedation
Erythromyacin- help empty stomach
Neurontin- brain stabilization
Suppository- bowel emptying
Phenobarbitol- seizure
Melatonin- sleeping aid
Clonadine- agitation
Ativan (if needed) agitation

Impressed :)

So I'm really excited about this news so I thought it needed it's own post. Charlie held his head up by himself for 1-2 min. At the begining of his PT session today, Janine sat him up and he held his head in an upright although favoring the right side position all by himself. Of course, by the time I went to get the camera he was tuckered out and didn't do it as well again but we both witnessed it and were very impressed with him.

Let's Celebrate! :)

Today the NeuroTrauma Unit of Primary Children’s threw Charlie a going away party in the rehab gym. Jenny and Amy made a special cake with everything Britton had requested (green frosting, funfetti cake, and sprinkles) It was delicious! It was so fun to see everyone that has made such a difference in Coop’s progress. They do these parties on Tuesdays for the long-timers so this is a sign that we will probably not be here next Tuesday. I told the staff that they were secretly celebrating that they didn't have to put up with us anymore.

Britt took this picture of us. We had to move to get in the frame.Amy and Jenny dishing up cake and "Super-Cooper ice cream"Dr. Such-Neibar, Mandi and SteveSusie Charlie's nurse today. She didn't get to stay long at the party because she had to check on Charlie.Britt giving Dave "knucks"They saved this piece for Rob. Do you think it will last until Friday when he gets back?More fun at the party.

Me, my Dad and Coop

Aunt Susie perfecting her bum patting technique

Getting closer....

Dr. Terry Such Neibar came in this morning and said that they want to try the GJ-tube and then it is home for our little man. She said that it would be just a matter of maybe one day after the tube is changed before he is released. I do not know about all of you, but I find that it is very exciting and very scary at the same time. It is pretty nice to be here in the hospital and know that if anything goes wrong the nurses are right outside the door or even taking care of it already. For instance: When I was spending the night last week with Charlie, the nurse woke me up in the middle of the night and said that Charlie had not peed for too long and he needed to catheterized and then given an IV to hydrate him. If he had been home, I think that we would most likely have waited until the morning to do anything about it. He probably would have been all right but it is nice to know that all is being charted and measured (measured in and measured out). But truly, on the positive side, he has progressed to this point and I am excited the most for this. Still not a definite day but real soon. Grandma Kathi

Upright :)

I relieved Rob this morning and had a hard time kicking him out of the hospital and back to work. Today has been pretty good because I have had lots of one on one time with Charlie (ie. patting his bum time). We changed the formula yesterday back to Enfamil and we are going to give it one more day to see if we think it has made a difference. So far he has had less residual stomach acid and less liquid poop but I'm not conviced that it has made him feel completely better. Dr. Jackson will probably try the venting G-tube tomorrow and if that doesn't work we will go to the G-J tube. We went to OT this morning with Neale and she put him in a stander. This looks like an ancient torture device but is a contraption that actually beneficial for him. Some reasons it important for Charlie to be in a standing position is it increases bone density, helps digestion (gravity pulls food down), promotes head control, makes him use his torso muscles. Neale mentioned some more but I can't remember them all. She thinks he should work up to 30 min. 3 times a day. He didn't hate it but didn't love it either. When he was completely upright, his head flopped forward but he was able to turn it a little to the side by himself (the right side of course).

we might just have it...

worked out finally. To sign up for the "Running for Charlie" shirt, click the link on the right sidebar which will take you to a little webpage I set up. We'll try to bore you less with these updates from now on. -meghan

"Whistling Dixie"

I got called a southerner today! Driving back from Idaho to be with Charlie and spend the night at the hospital I stopped to top off the Hy-railer in Burley, Id. and the service station was full so I pulled up behind a car that was in mid-fill to wait my turn to over pay for fuel. I got out of the truck to stretch the legs and the AARP member at the pump glared at me and randomly spouted off with, “You southerners are all in such a blank blank hurry.” and that was it. Apparently I am unaware of some arcane rule of petroleum procurement that says it is improper to queue if pumps are all occupied… my bad. What I now know is that if no pump is available you should drive laps around town until a spot opens up as to not cause the current patrons to feel rushed in any way. Bear w/ me for a bit as I have some other issues with this exchange that I need to get off my chest and then we can get to the purpose of this post. At what point in our world did coming from Utah make us southerners? Admittedly, I love NASCAR, grits and firmly believe that if someone cuts you off in traffic and doesn’t give the little “sorry” wave you ought to be able to get into the back of’em, git’em loose, and put’em into the wall, but I am no southerner. Marilee, Gary, Chumney and Bruce no offense but I still have all my teeth, my family tree does fork and I have never been to Kentucky.
Here’s the point of the story. Today at that gas station I saw in myself actual evidence that Charlie has changed me. Before Charlie got sick I wasn’t really known for keeping things copasetic in situations where tact and patience was required and I probably would have humored myself w/ a snide comment in reply or some other measure of antagonism in attempt to berate this ornery man. But instead I just smiled and thought to myself that stupid crap like that is so paltry in the grand scheme of prudent priorities that it shouldn’t even warrant a response. You always hear the cliché “don’t sweat the small stuff” but for the first time in my meager existence I get it. Charlie has changed me. I’ve got a new priority set and if you don’t believe me just ask Angel, I did a batch of laundry the other day. I read daily comments from you all about how my little boy has changed/affected your lives and I’m somewhat ashamed to admit that it took this long for me to realize that he got me too.
I probably should apologize to any members of the Gem State that I may have offended in this post and maybe you too think that I am a southerner but let it be known that I love your State and would consider it a privilege to call it home.

Charlie Update: “Finally” you all are saying. He’s slept ok tonight but its all clonadine induced. Other than that he’s pretty fired up when he’s been awake today. I’ll miss him again since I head to Wyoming in the morning but it has been great to be here tonight. He really is a special little southerner. Randa, a RN here and a surrogate grandma to Charlie persuaded the Doc’s to change his formula back to what he was on before we started having the feeding issues so who knows maybe he’ll take to it a little easier?.

Angel told me about some visitors from Summit County we had this weekend and I am blown away at how wonderful people truly are. Complete strangers yet so generous. Thank you so much, I don’t really know what to say, and that rarely happens. I just hope that I get the chance to influence a family someday in the way you have influenced ours. Thank you for being so thoughtful.

Here's a few pics from the day.