HAPPY BIRTHDAY CHARLIE !!!

The big man turns uno today. We'll post some pic's later of his rage'in party tonight and update you all on how great it is to be home. Thanks for the continued support.

We're home :)

Turning on the cochlear implant. It took 2 hours for programming and teaching. Dr Such-Neibar stopped by because she was expecting him to be more irritable but we didn't see any change.
Testing the car seat to make sure it supports his head. When we came in to the hospital he was in an infant carrier but since he has grown we needed to upgrade


Coop was so sad to say goodbye to the "baby whisperer" Janine
Goodbye Shannon- We will miss you
Rob had been looking forward to taking Coop in the wagon ride ever since we got here but we never made it so I had to use it to take him to the car just for a picture. Daddy- Coop has missed you this week.
Britt woke up from his nap and was really excited to see his little bro was home. He immediately went and got a stuffed animal for Charlie and placed it in his bed and then tried to tickle his toes when he was fussing. He's going to be such a great big brother.Sweet dreams.

Coop has done fantastic since yesterday morning. He has had several hours where he has been awake and calm. He slept the whole way home and was great pretty much all day. The home health nurse came by to set up the feeding tube and assess him. She said everything looks fine so we probably won't need to see her again. He is also set up to go to speech therapy, physical therapy and occupational therapy once a week. We go back to see Dr. Such Neibar in one month and will get the g-tube changed to a smaller button at that time. Last night it took me 30 minutes to figure out the 8:00 medication but luckily I have already gotten better. Charlie did really well throughout the night and today with only a couple periods of fussiness. I am loving having him home again!!!

Last Day :)

This morning has been a whirlwind. Charlie threw up again last night at midnight, the exact time he did the night before. It was after being off of feeds for hours so I haven’t really found a connection yet. We’ll see what tonight brings. This morning we went up to the audiology department for 2 hours to program the implant. He slept the whole time so the audiologist programmed it to average comfort zones. We are supposed to experiment with 3 different programs and different volumes over the next two weeks and meet with him to reprogram. The process usually takes 6 months to find the correct program with a healthy person so Jason thinks Charlie could take a year to find the right parameters and teach his brain to recognize it. We are looking to be leaving around 1:00 this afternoon. I will definitely keep posting about our transition however it will be less frequent so please be patient while we figure out our new normal. Thanks again for everyone’s support and love. We rely on it daily!!!

GOODBYE PCMC. We will miss you!!!

Last Night at PCMC :)

Well, as I sit in the hospital for the final night I have a bitter sweet feeling. I don’t think it has hit me that we are actually leaving. My car only knows how to get to the hospital and home anymore. We have been looking forward to this day since we came into the hospital and now I hate to leave even though I have been well prepared. It’s like the training wheels have been taken off and we are now supposed to ride by ourselves. The freedom will be great but I liked the reassurance of something to fall back on.

I have been a little crazy lately with getting all of the last minute things figured out for our return home so I haven’t posted much (or returned phone calls- sorry everyone), but not much has happened with Coop either. He has been pretty well behaved today and even slept through his bath. He has had a lot of his new friends stop by for some last goodbyes. Everyone is so sweet! I feel such a strong bond with the people here because they have helped Charlie get better and I can feel the love they have for him.

To everyone involved in Charlie’s care at PCMC. THANK YOU!!! And WE LOVE YOU!

T Minus 1 day!

Coop is having a nap right now while Meggie is doing some rocking. He has had some PT this morning in his room in an effort to learn to live without the gym. Last night our little man was able to hurl (threw up) to the end of the bed so Auntie Susie is going to get a bath on the afternoon schedule. Grandma Kathi reported that his tummy has been a bit rumbly today so we are grateful for the venting tube. The goal is to blow this joint tomorrow afternoon, but we aren't going to get too excited yet as Super Cooper has a way of doing things his way!

Thanks for all the prayers and support. Keep your fingers, toes, (and maybe eyes) crossed that all goes as planned.
--Auntie Susie

The End is in Sight :)

He had another good night and has been awake for 2 hours and is semi-content. Our plan is to start getting everything in order for discharge on Wednesday afternoon. We have ordered more of the venting g-tube bags so hopefully they will arrive by Wednesday. The ear surgeon came by and said everything looks good so we are clear to turn on the cochlear implant. We will meet with the audiologist on Wed for the programming. We are also having the eye doc come check out his vision before we leave so we know where we stand. We are excited to finally have a discharge date!!!

3 month Anniversary :)

Today Charlie has been in the hospital for 3 months straight. Here are some pictures to compare. He now weighs 24 lbs (19.4 lb when we came in) and is 29 1/2 inches tall.

3 months ago this is how Charlie looked. An IV in every limb, breathing with a vent and not doing any voluntary movements.

This is how he looks today. Only 2 tubes and 1 will come out tomorrow

IRob is not allowed to be by Charlie because he has a cold. He hates it, but maybe I can convince him to post from home but in the meantime I'll update (Angel). Charlie had a great night, only waking up once at 4:00am. He is now fully titrated over to the g-tube (all of his formula is going in his stomach) so the tube in his nose will probably be removed tomorrow. We will keep him on continuous feeds even after we go home and then down the road we will try bolus feeding (feeding all at once like meals). I haven’t seen any liquid or air in the bag yet but he is tolerating his feeds well so the venting tube must be working. Rob bought Coop some flavored lip smackers (chap-stick) to encourage positive feedback for sucking his lips. He seems to like sucking on his bottom lip.

Susan and John spent their "date night" visiting with Coop!Cami Poulson Lane (married Rich Lane). Rob and I went to school with Rich. Such a small worldLouie & Rodrigo- the coolest kids in PCMC. They have races down the hallway in the middle of the night and Rob is often found in Louie's room playing guitar hero until the wee hours of the morning. We will miss them.

Since the weather is so nice today we went outside for a walk to let him get some fresh air. Charlie hasn't been outside for so long and he really seamed to like it. By the fountain in front of Primary Children's Hospital

I saved this picture for last because it was my favorite part of today. When he was basking in the sun his pupils reacted and became the same size as mine were at the time.

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!