Busy Boy :o

Charlie had about 45 minutes of sleep and then the orders came from the resident to re-start fluids through an IV and get a urine sample to see if he has an infection. When Stacey cathed him he peed all over so the sample was contaminated. She will need to wait an hour and then try again. He was already mad from being cathed and then the IV team came.

1st attempt at inserting the IV. Charlie moved his arm so much that the port came out before it was secured.
The foot proved to be an easier stick.

We decided to weigh/measure and change his bedding so hopefully when he calms again he gets a big nap. Good news: While he was calm due to the clonadine he digested his food (only 20 cc residual compared to 45cc and 55cc earlier today). He has calmed down again now that we have left him alone for a bit.

Rob, the nurse, came up with a solution that may settle his stomach. Do you think the doctors will approve?

Sweaty boy! :(

I get to spend the day and night with the little man again. I have only been in for a couple hours a day lately and I have really missed him. Rob has been here for the last couple days and from what he tells me Charlie hasn't been behaving very well. Per Rob, Charlie was fussy all day yesterday and only slept a total of two hours (some of which must have been during therapy-see previous post pictures). Then, he had an average night of sleeping from around 2am to 6 or 8. Because he was so relaxed (low blood pressure) at 6:00am he didn't get his morning dose of clonadine. He has been fussy, sweating high heart rate (180's) and moaning all morning. The nurses have orders to vent his tube to get all the air out of his stomach every two hours. When they vent, air doesn't come out but instead his feedings do because there is so much pressure. The doctors have said if there are more than 35cc of residual (food in his stomach) they are supposed to turn off the feeds for 30 min and give him time to digest. He has also been put on 3/4 formula and 1/4 pedialite to help with the digetion. When Rob asked the doctors about changing formulas they said he is already on the easiest to digest so they wouldn't know what to switch to. There is still a little bit of fresh blood in his residuals but nothing like the disgusting picture that Rob posted a couple days ago. (Sorry about that.) Still thought to be drainage from his ear surgery and nothing to worry about. Charlie has been given Motrin and Tylenol this morning to see if that would change anything. It didn't. We decided to not give the Ativan until after his clonadine dose at noon because we didn't want to chance his blood pressure being too low again and then not being able to get it for another 6 hours.
His PICC line was taken out yesterday because it was loose and when they did an X-ray to check placement it was "no where near where it should be"(pulled out to the brachial plexus instead of right above the heart). So now we are not able to give morphine or IV fluids because he doesn't have a port. This may become an issue today because he hasn't had a wet diaper since last night. If he doesn't calm down and have a wet diaper soon the nurse is going to page the resident and get some feedback. I think the non-stop sweating may be dehydrating him or it may be related to the fact that he isn't digesting the feedings. The nurse just did an ultrasound of his bladder to see if he is retaining urine and there is some but not a lot. As I am writing this he seems to be calming down 28 minutes after receiving the clonadine. Yipee!

Picture Update.

Today has been completly void of any news so it's pictures you get. For those of you who like to know more trivial details we can do this quick. Bath before bed, slept really good. At least I'm told he slept good, I was out all night as well. Woke up at 0600 and stayed mad until 1300. One event of some overly foul elimination, dad to the rescue. Therapy w/ Neale and new boots compliments of Janine. Sleeping quite well right now however food has yet to find a welcome place in Char's world. Venting q2 w/ mixed results.
In the Tube showing dad how he can sleep through therapy.

No he's not crawling, but if he was how cool would that be?

Neale (OT) leting the funk zone under his chin dry out.

Wide awake and calm in the tub.

Stef providing superb care at the bedside.

A mom and her boyz.

The Day with Aunt Steffy

Rob demanded that I spend a bit of my time tickling the key of the keyboard. Charlie had a rough day today. He was upset that Jared left him and was not taking him along on the road trip. He put up a good fight, crying through his meds and a dose of Ativan around 11:00.

At noon they tried draining out his stomach. Out came a ton of air. As soon as that was out, Charlie was asleep. In fact, he was so relaxed that that he slept until after 5 when PT came in to stretch him out. Since then he has been upset once again. Poor little guy!!

As for exciting news, Cooper burped!! A real one. Just snuck up there and had to come up.

It has been a great day for me. Even with Charlie so upset at times, it has been a blessing for me to be here with him. I enjoy being an aunt for such a wonderful boy and his family.

Stefanie

Not so hungry

Well I think it is safe to say coop is not going to follow his father’s girlish figure, now let me explain. Coop had a pretty good night he fell asleep again about nine o’clock after not being so happy all afternoon the good news is he did so without the help of Adivan. He slept well till about four and he woke up not the happiest boy in the world after we tried everything to get him back to sleep Shelby decided to check the residuals in the G-tube and problem solved he had about 70cc of formula just hanging out she called the doc and they stopped his feeds for a few hours and he put him self back to sleep and has been sleeping like a champ ever since.

So as the doc’s came through this morning the news is the ear doc’s say his ear looks fantastic which I guess is an improvement from great yesterday morning. His doc’s said they are happy with his night but they need to figure out the feeds but they didn’t mess with him much as to not wake him up and that’s about it.

Well again me not being much for words, spelling and grammar lets give this a shot. The last few night hanging out with Coop have been great and I am not so excited to go out of town and not see him for a few days but if you have ever had the chance to spend some one on one time with this little man you will most likely agree with what I am saying but I never would have guess how much peace a little guy can bring you and how quick you figure out what is important in life and what just doesn’t matter at all. These have been the fastest night I have ever had and you just don’t want them to end and push you back into the real world. Well to sum it up I love this little man to death and he has taught me more than I ever thought I could from a ten month old. So that’s it the way I see it after two posts two days in a row I don’t have to talk for like a month. Let’s keep pushing coop along in those Charlie steps and learning from him.

I Hope You Have Eaten...

Today has been a tale of two halves. This morning Char did famously at PT and then spent 4 hours sleeping on his old man. Then, upon having sufficient rest for the remainder of the afternoon he has been quite naughty since he woke up at 2. We’re talking naughty like needing morphine for the first time in weeks. As best we can figure his poor temperament is due to his ear surgery but primarily in part to him once again showing no success in tolerating full formula in his diet. Currently they have suspended his feeds to give him respite while morphine is efforting to establish a satiable degree of calm. The picture below is not chowder from the Rainbow Café like you might think, if you have had the pleasure of dining at this bastion of culinary genius, but rather the residuals taken from Charlie’s tummy while diagnosing his sub-par comfort level. Tasty.
While this visual is fresh in your minds, allow me to impress upon you the pungency of this broth while you continue to dry heave. Few odors have had my olfactory receptors on high alert like this. I safely can put this as a clear number 2 on my list of foulness second only to Shani after Mexican food. Now my intent was not to disgust or unnerve but to more appropriately illustrate the gastric distress that my boy is under. The small tomato like parts are dried, partially digested bits of blood that are coming from his ear surgery. “You know they are all connected.” I did not but I am told by Dr. Warren that this is not alarming so be not alarmed. Dr. Warren (pictured below) is the miracle worker that gave Charlie his new ear.
Hopefully tonight will find Charlie in a far fonder state than he has spent his day and sleep will be in excess.

What a stud

Well let’s start this off by setting a few things straight from the comment section last night. First Suz almost 30 right you have been getting tennis balls for your birthday for the last 79 years, and second I have changed coops diaper before but nothing like the small explosion last night thanks to Shelby I mostly held legs but strong work little guy.

Not much to say for the night he started out not too happy about mom and dad leaving but with some meds he was sound asleep. He woke up not so happy about midnight with some messy pants we changed him and gave his meds he was up for about two hours. Then for the most part he slept the rest of the night up off and on for meds and diaper changes. He woke up about six and is a sad little man with everyone poking him all morning. The team that worked on his ear came in and checked him out and said everything looks great.

Well Dad and Dave will be here today, if any of you know what it is like when Rob and Chad are together it is very similar so it should be very entertaining or loud and obnoxious take your pick we should all feel for everyone around them. Angel is right it is hard to write a post when he is doing so well and there is not much to tell you all. So it is not much but something to read when you hit the refresh button.

Today's Adventures :)

Meggie giving some snuggles even though he was still stinky from surgery
Nurse Becca cleaning off his face

Workin' out with Janine. He was so sleepy today that she did a lot of stretching

Mad Face

Zen state

Super staff at PCMC-Xochitl, Melanie, Nicole, Kelli Amy and Cherie

Doug Wright from KSL delivered Charlie a stuffed moose from the telethon-donated by the Ken Macey family and Leslie Covington-Taft.
It's difficult to tell from this picture but the left side of Charlie's head is swollen towards the back. He is on his back due to the g-tube so the swelling from surgery is pooling in the back of his head. He also pulls his head towards the right side ever since the shunt was inserted so he may be getting a flat head on that side too. The bump on the top right is his shunt.

To help the swelling go down Rob and I have tried to hold Coop sitting upright and are now going to force him to turn his head to the left.

Rob teaching Coop the ins and outs of video games. You can tell Coop is really into it.

Tonight Uncle Jared will be on night duty to make sure Charlie behaves himself.

Unwrapped :)

The ENT fellow unwrapping Charlie's pressure bandage
Inspecting the site and feeling for the implanted disc. There is too much swelling to find the exact location right now but the site looks good.

This picture shows his shaved head and incision site. The stitches are underneath the first layer of skin ad they will disolve in a couple weeks. There is some swelling on his head that is expected and it will continue for a couple days. The top layer of skin is held in by steri-strips.

Like a Champ! :)

Coop had a pretty good night last night. I expected to up all night long but I guess he was just exhausted. Since surgery was so long he did not recieve his 2:00, 4:00 or 6:00 meds so when he he fully woke up he was pretty mad. He got a little Ativan around 9:00 and calmed down for the night. He woke up a couple times througout the night but they were short spurts of fussiness and then went back to sleep. The surgeon's partner (I think Dr. Warren is out of town) came by at 6:00am to check Coop out and said everything looks good. He checked in his mouth because last night there was some old blood in Charlie's drool and in his g-tube. He thought that was related to the breathing tube during surgery and everything looks good now. Dr. Such-Neibar just came in and was pleased he did so well last night. She was prepared to get a late night call regarding him. The plan is to start from the begining with his feeds (1/2 formula and 1/2 pedialite) starting out very slowly and working up to full strength and then bolus feeds (feeding all at once like a meal). The medication needs to be grouped together in 6 hour stretches instead of 2-4. She would also like to see him not need the Ativan for a while before we go home. She does not want to rush the feeding titration because she said everytime we do Charlie doesn't tolerate it well and we have to start all over again. She thinks it will take about a week before we are ready to go home. Charlie is also tapering off methadone but that will take 9 weeks. It's exciting to be coming off medication instead of adding more.
Charlie with Randa- an incredible nurse

He's Back !

Rob and Charlie just got back from the recovery room. He is already opening his eyes and moaning a little. One reason for the delay was that Charlie had a blow-out during the surgery so they had to stop and change his diaper and the bedding. The docs say he will most likely have a rougher time tonight due to surgery but there shouldn't be too much pain. The bandage on his head is applying pressure to the surgical site and will be removed tomorrow. I'm so relieved that today is over and everything went well. Thanks for all of your prayers

We ran into Christine Morrison from the old ward. She is here with her boy that had emergency surgery.

Karly (a friend of Lindsay's and a PICU nurse) stopped by to say Hi

Grandma and Grandpa Barlow getting tired of waiting

All Done

Dr. Warren just came by. Charlie did well. They got 8 of 16 electrodes placed - which is what they thought would happen. He is in recovery. He will have a little pain from the incision and he will probably be irritable but things shouldn't be too bad. He'll have a gauze wrap around his head until tomorrow. We are so happy things went well. Thanks for all your prayers, encouragement and love.

Still in surgery

The OR nurse called again and he is still in surgery and things are going fine. They were just about to implant the device and then would close up. She didn't know how much longer.

Doing fine so far

OR just called and everything is going fine. So far they have been creating a space for the implant and will be inserting it shortly. They expect it will be about another hour before he is done.

Green Light!

They still can't find the implant that was ordered for Charlie but the University of Utah had an extra of the same model so we are using that one. He has just been taken back to the operating room and the nurse will call us in an hour with an update but the surgery will take 2-3 hours. My dad is teasing Rob that now Charlie will have the University of Utah a permanent part of him.

Still Waiting...

Last picture of left ear without a cochlear implant device.

We are still in the OR holding room. Charlie is sleeping peacefully due to his 12:00 dose of clonadine. The resident came and told us that they are still unable to locate the device so they are calling the University of Utah to see what they have available. In the meantime our anesthesiologist said his nephew had a similar history with meningitis and recently recieved a cochlear implant and writes about his experience. His blog is http://blogs.chron.com/nowhearthis/
We haven't read much of it yet but if you are bored it might make the time go faster until we are taken back for surgery.

Misplaced?

Holding Char until the last minute before surgery.

Saying good-bye and leaving him in the hands of the surgeon.....or wait not yet...

We are in the OR holding room waiting for someone to locate the cochlear implant that supposedly delivered on Friday. We have already met with the anesthesiologist and the surgeon and they are waiting as well.

Here we go...

Charlie is on his way to the ear shop. Estimated O R time is 2-3 hrs.

What About Blog?

How cool has this blog been? Admittedly when I initially heard about the whole blogging business I gave Angel a load of crap and in not so many words told her it was all “hokey pokey.” Oh how wrong I’ve been. When my thoughtful sisters, Meghan and Susan (what would I do without them?), started this up in the infancy of our stay I looked at it as a way to keep folks in the loop while in the PICU and then it would go away. Obviously it has not, it has evolved into its own beast and I have come to understand that maybe the “hokey pokey” is what it’s really all about. The blog has been a lifesaver for us. Not just in keeping folks updated on the day to day life of our preciously lovable little boy but in providing an avenue for us to reunite w/ old friends and make many many new ones. You all have been so great with you kind words and prayers but your innumerable acts of pure service, many of which I’m sure have gone unnoticed and unappreciated; have deeply affected us as a family. Angel and I feel so undeserving yet unequivocally blessed.

As we undergo Char getting his new ear and with the end of our stay hopefully in sight it is “a time of great excitement where my mind is called up to serious reflection and great uneasiness.” What do we do w/ the Beast that is this blog? Allow me to plead my point and then we will welcome any elucidation and/or remonstrance (That was for you Whit.) in the comment section where only the brightest and most insightful bloggers hang and bum steers and biases are not welcome.

We have sincerely enjoyed sharing our story w/ you all and reaped invaluable insight and support from your loyal interest. Some of you have been kind enough to share your stories here as well and we are so thankful for the support, hope and love that they have provided however the tears that followed we could have done without. In raising Britton, he and I have had the understanding of machismo that you only cry when you’re bleeding, a lot, but now we have discussed that the list of events that necessitate ocular mist has grown. It’s now ok to loose it anytime you get good or bad news from doc’s, randomly reading blogs, meeting The Coach, holding Charlie when he won’t calm down or wondering why this is all happening to such a perfect little boy. I don’t mean to sound trite but there is a certain perspective that comes from having a chronically ill child in your family. Hopefully through this story you’ve been able to glean a portion of that perspective. I think what I’m trying to say is that while here in the hospital we’ve had nothing but time to do things like visit, post and keep up on the ever growing list of blogs we love to often read. But once home our primary concern will be our boys and their welfare. So the real purpose in this post is to plant the seed that when the great day arrives that we get to take Charlie home and be a family again the priority of blog updates will inevitable slide down the list of import. I in no way mean to sound presumptuous like if the blog stops your world will be found lacking, but while attempting to prioritize a future home life w/ some of those closely associated w/ our family the idea of suspending the blog has gone off like a fart in church. So, since none of us like stink on the Sabbath, we’ll keep the blog up but be on notice that update frequency will decline, once a day, maybe once a week and rest assured it is Angel and I whose world will be found lacking because I am confident we enjoy all of your comments infinitely more that you might enjoy our posts. Angel and I are so lucky to have all of your support and prayers but where we are truly lucky is to have a sweet and special boy in our family. A boy that will bless us all to limitless ends every day he is with us. In reality we are so fortunate the Almighty saw fit to entrust us with this perfect spirit and I hope we don’t let him down.

Now feel free to talk amongst yourselves.

While you are waiting :)

Rob concentrating while changing Charlie's g-tube dressing
Britt playing dinosaurs with Dave and Kate- the NTU nurses
G-tube dressing

Rob giving meds

I know you have been waiting all day for Rob to post but in the mean time I thought I would update you on Charlie's day. I know it won't be as entertaining but at least it something. He started out calm throughout the early afternoon. I held him from 12:00 to 2:00 then Rob learned how to change his G-tube dressing and he was upset for the rest of the night. Changing the dressing involves first peeling the tape off of his stomach and then cleaning the area before finally re-taping. From then on we tried everything to calm him down again. I tried holding him again, stroking his cheek, cold washcloths on the forehead for his sweating, Ativan, Motrin and leaving him alone. He was fussy off and on for 4 hours until it was time for clonadine again. His feeding is still on 1/2 formula and 1/2 pedialite and 40cc/hour and he has been doing fine. He will stop formula at midnight in preparation for surgery. Dr. Warren has clinic in the morning until 12:30 and then has been worked-in Charlie's surgery afterwards. Surgery will probably be around 2:00 and is a 2-3 hour surgery. Rob is currently learning how to give all of Coop's medication and he passed his test except he missed one.

Sunday Morning

Slept good, pooped good, drooled really good. I'll post a more detailed dissertation in a bit.

Sweet smellin'

I know that everyone misses Rob's extra long blogs. He has a way about taking a regular day and stretchin it out into a long discription. But for now and for those of you that check this blog before retiring for the night, I should get on it for you. Rob is due at the hospital momentarily but we can't wait.
Charlie is sound asleep right now as he should be for we gave him a bath in the tubby and rubbed him down with the good smelley lotion that Angel has for him. Then we gave him his 8:00 meds (the nurse calls them his 8:00 cocktail). He settled down for a hopefully long nights sleep. All is well here. Sweet Dreams .....

Gold Medal Baby

Last night Charlie and I held our own Olympic Games. Charlie was the first place winner in "I Can Sweat Through My Blanket" contest as well as the "Smelliest Diaper" event. I did win the blood pressure contest; his got pretty low during the night. However, we both scored well on the "Let's Sleep All Night" competition with Charlie pulling ahead at the end - he is just waking up.

I love this little boy. He looks at me with his beautiful eyes and I talk to him and tell him how much I love him. I tell him that he has a big spirit and is strong and brave. I also tell him that Heavenly Father loves him and that He is with him all the time. Even though the doctors say he cannot hear, on some level, I know he hears me and that he knows everyone loves, worries and cares about him. Knowing that you all love and care for him too is a comfort and a blessing to the entire family.

Thank You!

G-ma Cheryl

Back in School! :)

You know the joke that the state requires you to pass a test in order to drive but there is no training required in order to have children. Well I don't think PCMC agrees with that philosophy because in order for us to take Charlie home, Rob and I are required to have a certain amount of education on Coops care. I have been watching videos, reading handouts, discussing things with nurses and taking TESTS! I thought I was done with school. I wonder what would happen if I failed the tests would they keep Charlie? Well, I’m happy to say I passed today’s test with flying colors and now it’s up to Rob to keep up our score for the Christensen Team. Afterwards we are supposed to pass it off with the g-tube lady in person. They take this stuff pretty seriously but I'm glad they do.

Today has been a really good day except for fighting with insurance companies. Coop is scheduled for surgery on Monday and UHC waits until today to say the expedited process takes 7 days. Dr. Warren’s office has been on the phone with them for hours throughout the last week getting them the required paperwork, medical necessity letters, MRI reports etc. with the surgery date noted on every page and there was never any mention that it takes 7 days. Sherry in Dr. Warren's office has asked for supervisors, a peer to peer review and even made lawsuit threats to push it through. I’m glad she is on our team. Dr Warren wants to keep him on the schedule and see what we can figure out between now and Monday. It may come down to calling it an “emergent” surgery where they get authorization after the surgery. But an $80,000 surgery is a big risk for them to take but there is no other time slot for us to move to.

Charlie has been awake for the majority of the day and sort of fussy but there have been many times that his has been just calm with his eyes open. He “worked out’ at the gym and practiced bending positions like sitting cross-legged while being supported by Janine. He also practiced initiating head movement while being rolled onto one side or the other. He did really well and then came back for a long snuggle with me in the rocker. He slept for a couple hours and is now back to his awake slightly fussy state. His feeds have been turned up by 2 and are now at 34cc/hour. Randa, one of our favorite nurses, is back for her 4 day stretch and said she sees improvement in his wakefulness over the past week. I think when Rob comes in later today he will notice it too.

mid morning

Charlie was settled with his 6 o'clock meds and has been napping since about 6:30. Luckily, his agitation never got bad enough to require any Ativan. Jenny pulled out a binky to see if he would respond to and suck on it like he does his suction tube. He sucked a few random times on it, but he really seemed to calm down when I would massage his gums with the rubber part of it. Maybe his gums are sore from his teething???? Anyway, now he is slowly starting to wake up, and is eagerly anticipating hanging out with his mama today! Randa is nurse for the day and she will be giving me a lesson soon on how to crush up any tablet medication he may need at home and how to put it through his tube. Side note: According to Angel(who just walked in) Britton is pretty excited for his daddy to get home today from Hannah On Tanna. -Shani