Blogger of the Week Award

Well, it's official. Rob deemed me, Roxey, as the Blogger of the Week, thus giving me the privilage of posting the evening announcements! What an honor! Rocky and I are sitting with sweet Charlie while mom, dad, and Britty go out to dinner. Charlie told me he would rather be with mom and dad, but is kind enough to let us fill in for a short time. So, here's the update: Charlie has been storming for a few hours now, his many meds giving him no relief. He is sweating like Coach Whittingham (sp?) after 4th and 18--or were those tears? (Thanks for the analogy Rock.) In our feeble attempts to "calm the storm" we've put him in his PT chair, cooled his head with wash cloths, and finally turned off his feeds (I didn't do it), to see if his tummy needs a break. Pray for some rest--he needs it.
Until next time, this is Roxey, signing off......(by the way, this is an awful lot of pressure posting on this blog!)

Mostly Sunny

The grandkids got to go on an Easter Egg hunt yesterday morning. Ryry was worried about the Easter Bunny but he clung on to Rob and conquered his fears.

Britty only gathered green eggs. He did get a pink one for his mom and blue one for daddy.

Charlie was a little irritable after his surgery but pain meds are being given on a regular basis. He slept well most of the night but did need some Ativan at 5:30 a.m. They continue to monitor his heart rate, O2 and blood pressure. Had oxygen on and off during the night - is doing well without it now. He is sleeping well---looks so peaceful and beautiful.

Jo is coming for awhile this morning so Mom and Dad can spend some time with Britt and get some things done around the house.

No More tubes (on his face anyway) :)

He is back from surgery and everything went well. He no longer has any tubes on his sweet face and now has the tube coming out a little above his belly button. Dr. Jackson said everything went according to plan and took pictures of his esophagus and stomach. Everything looks normal!!! He did require oxygen when he was in recovery but then came back up to normal. Right now he is sleeping peacefully and all of his vital signs look great. Thanks to everyone for your prayers!!!

Earlier today we went to the "sound booth" to test if the hearing aids turned up to amplify 100 decibels would have any impact. As you can see he slept right through. Rob was in the chamber with him and had ear plug in and said that some of the trials hurt his ears. This information will be used when the audiologist discusses his case in the cochlear implant conference

Great Night :)

The resident came to check Charlie this morning and I told him he had a great night and he even slept through 2 feedings without discomfort. (I know it’s confusing) Coop slept so well that he didn't even wake up much during the multiple suctioning throughout the night. His blood pressure was too low (80/35) at 8:00am to give clonadine and he has remained calm up until now. He is starting to sound "gunky" again so I'm really hoping he isn't getting another bug right before surgery. Colby, the resident, said the blood work came back fine, but the ph-level was confusing because it came back as 0. The value is a logarithm so according to Colby it is unlikely to get a 0 value. He will research it to see if it is a real value or an error on the test. The normal gastric level range should be 1-2 so 0 would be very acidic. Charlie has only had one wet diaper and one urine sample in the last 24 hours so he will be getting some IV fluid in addition to his scheduled "maintenance fluids"

Did You Forget?

In case any of you forgot Bronco, the greatest thing since 1984, Mendenhall came to visit Charlie yesterday and the world smiled. I concur w/ the earlier comment about Charlie misbehaving today because he missed The Coach. While The Coach was in Charlie's room yesterday our little boy was very well behaved because he knows that you have to be on your best behavior when The Coach is around because he's The Coach. All of you would do well to remember that if you are ever privy to a meeting w/ The Coach.

Really the only purpose of this post is to tell everyone again that BRONCO MENDENHALL came to see my boy... it wasn't a dream! GO COOGS!

Finally Calm :)

He has finally calmed down and he is currently being fed. Yipee! It looks like the combination of suctioning his nose and mouth, 8:00 medications, and just plain exhaustion has put him into a slumber. His blood work came back with some slight abnormalities (low platelets I think) but nothing to explain his irritability. We still are waiting for the urine test results and PH-level. Also, he will be getting his last feed at midnight and then nothing until after the surgery tomorrow afternoon. I'm curious to see how he does without any foods, my guess is that he feels much better. We have not put on his splints or hearing aids at all today so we can detect what it really bugging him. Plan for tomorrow is they will give him IV fluids to prevent dehydration starting at 6:00 am and he will recieve all of his regular medication. He will have hearing test in the booth again with his hearing aids turned up to amplify 100 decibels. So far we haven't noticed any response. The G-tube surgery will be at 3:30 with Dr. Jackson. The GI doc said he will look around during the surgery to see if he notices any visual stomach problems.

This picture from this morning was too good to leave out. And yes, Rob does change diapers.

Uncomfortable Day :(

This picture shows about how the day has gone. Coop slept fine last night but at 8:45 (45 min after the first feeding of the day) he woke up and has been uncomfortable for 7 hours straight. We tried everything we could think of. We sat him up, he had a diaper blow out, tried to do all of the PT tricks we see Janine do and nothing worked. Usually when he gets upset the next round of meds does the trick but he was bugged right through his noon meds. He was sweating so much we changed his bedding twice. His heart rate started to climb so Janine (PT) came in to do some magic and it only lasted a couple minutes so she came back later in the day and worked with him a second time and after an hour therapy he calmed down for about 20 minutes. Janine and I both feel that he is acting like his belly hurts. The resident is a little confused because he is moving the food through, there isn't extra air in his belly, Coop is already on a medication for reflux and he is pooping. So what else could be wrong? We ended up giving both Ativan and Morphine and he is now sleeping. Colby, the resident, also ordered a blood and urine work-up to look for any clues. He also hasn't had many wet diapers so we may be giving him some fluids as the night goes on.

Rob trying all the PT moves to try to calm Coop

Applying pressure to his belly

Speech therapy tried oral stimulation with a sucker to see how he would respond. He sucked his lip a couple times but didn't like the sucker in his mouth.

Rise and Shout the Cougars are Out!!! :-)

All is right in the world once again and the Cougars of Brigham Young have come through in the biggest way possible for our little Charlie and his family, well mostly his dad. This evening we had a surprise visit from “THE COACH!” Bronco Mendenhall came up to the hospital to see us. Angel knew all about it and lied to my face telling me that we were having a conference w/ some of the Doc’s so we needed to be here together to meet w/ them. Time for the conference came and it was no doc that walked in the door of Charlie’s room but Coach Mendenhall, David Nixon (LB) and Andrew Rich (S). In hindsight Bronco could be a doc after watching him surgically dismantle the Mountain West for the last 2 years. Somehow they found out about Charlie and decided to make the trip into enemy territory to pay us a visit on their one day off from practice. Just to quickly sum up my astonishment/amazement, if you were to take Bosco beating Michigan, Miami wishing they never came to Provo, Beck to Harline, 4th and 18, utilizing the facilities next to Lavell, and blocking UCLA field goals and lump them all together you might be close to how I felt while we visited w/ the Coach and Crew.

What a truly genuine and personable man Coach Mendenhall is, so compassionate as he got to know us and Charlie. He had true empathy and concern for our situation, he cared. While we talked I had so many football questions that were going through my head that normally I would be dying to ask him but you could tell that his visit today wasn’t about opponents or depth charts it was about being there for a sick little boy and his family when they needed it. He made a comment about how sometimes we get caught up in wins and losses but in reality that stuff is secondary to things like this, things that make a real impact. He said that is what is truly rewarding. The high point of the visit for me was when he was handing out some Cougar wristbands to those of us in the room and when he got to me he took the one off his wrist and said that “this one made it through all of last season and hopefully it will help you make it through this.” I lost it a little, not gonna lie. It was great and Nixon and Rich are total studs for joining him on the trip and I think they might have even made a little bit of a Cougar fan out of my Ute wife.
I found out who arranged this and they have asked to remain nameless but in talking to them afterward they said that all they did was start the ball rolling and “The rest was all Bronco.” Nevertheless, thank you - thank you - thank you!!! And Coach, David and Andrew thank you, this means so much to us and maybe now Angel won’t get so mad at me for telling Britton that “ute” is a bad word and that “Rise and Shout” is the best song ever. What a day! The Coach was here!

Britton with no idea how big this is!

Charlie's new wristband and gear!

Coach sett'in up the boys w/ wristbands.

Cheryl Dee on Cloud 9!

Wednesday Update :)

OT therapy from Monday morning

Todays Update

The GI surgeon came to talk to us today about placing the g-tube (button). They will add Coop to the schedule on Friday afternoon. The surgery itself only lasts about 15 minutes but as we know there is a lot of the time spent in surgery prep and recovery. This is a relatively small surgery and with low risks but we are told that any surgery will increase his agitation and possibly set us back a bit on the storms. Afterwards, he will no longer need the tube in his nose. Someone questioned why he couldn’t keep the NG tube (through his nose to his stomach) until he relearns to eat. One reason is that the NG tube may interfere with his swallowing because something is running down the back of his throat also the NG tube can be pulled out very easily and he will probably need access to his stomach for quite a while so we have opted to do something a little more convenient.

The swallow study has been postponed until further notice due to his feeding issues. The speech therapist explained that if your gut doesn’t feel good the natural response is to not allow anything in your mouth. She said it is very important to make everything that surrounds eating a very positive experience and that we should not force anything. When he is opening his mouth by himself and seems to be comfortable with having food in his belly we will try again. Note to self: No more prying his mouth open to shove a sugar covered binky in his mouth. The doctor has changed his formula to one that is partially digested so he has less gas and hopefully will feel better. I think he is a little bit happier with this new food but not completely. If this doesn’t work the next step is to add another medication to help his system empty quicker. Other possible reasons to his irritation are gastric reflux, having his arm and leg braces on, just becoming more alert and not knowing how to express himself.

The following pictures are how we spent Sunday afternoon at PCMC. We went to church here and then took Charlie on a walk in his new cruisin' machine. Charlie had been upset all day so we were trying everything to calm him down. First the stroll down the hallways then a great nurse got special permission to swing in the gym. Nothing worked to calm him down so that is what clued us in about gastric discomfort

Rocking in the chair with his two boys then Britt lost interest and the other two fell asleep.

Just a little update

If you are like me, you turned on your computer first thing this morning to see if there is any news about little Charlie. Well, not much is happening here but I'll post a little something.

He wasn't very happy last evening - nothing seemed to help from 5:30 p.m. -1:00 a.m. (except for an hour nap). He didn't like the swing, rocking by g-ma, repositioning, diaper changes, etc. About 12:30, nurse Amy suggested a bath. He tolerated it and did seem to like the warm water on his body. After drying, lotioning, wrapping in a warm blanket, a fresh diaper, and a few meds, he fell asleep and had a wonderful sleep until about 5:30 a.m. (anyway that was when I first heard him.) He slept through meds, vitals and putting on his booties at 4:00 a.m. He has been fussy for awhile this a.m. but is resting now.

Angel can tell you more about his schedule for today and plans for the next few days when she gets here. I hope she had a nice b-day yesterday. She spent time will Britt, Max and Ann while G-ma Kathi was here.

I love this precious little boy. Sometimes it is hard to watch him when he is aggitated and there's nothing a g-ma can do to comfort him. Thank goodness for meds and medical personnel who can offer some relief to to this wonderful little guy.

My prayers are for a good day = a few improvements, some good naps and encouraging news.
G-ma Cheryl

Good Night :)

Charlie had a good night. He settled down after his 4 hour feeding around 12:30 or 1:00 then we both went to bed. He only woke up one time from 1:00 am until now. Hurray! So that further confirms the theory that the food is what is making him uncomfortable because he didn't have a feeding from 12:00 until now. He does need to get used to the sensation of having something in his stomach so we will continue to work through this. The dotor said things are going really well and she believes he is stable enough to proceed with the G-tube placement where they will insert a short tube a few inches from his belly button through the skin and into the stomach. After the surgery he will be fed through a little "button" on his belly that we will open and insert the food when needed. The surgeon will come by later to discuss specifics and when he can be scheduled.

Handsome Little Devil :)

Like I said earlier, Charlie has been acting uncomfortable all day, like his belly is bothering him. When he is uncomfortable he grunts then he swallows more air and that makes him more bloated which in turn makes him more uncomfortable so he grunts... you get the picture. Amber, the nurse, has taken a huge syringe (see picture below) and pulled out air from his stomach through his feeding tube and at 5:00 he calmed right down and slept for a couple hours. When he woke up again and would not calm down we tried the same thing but there was not much air so we deducted he must be backed up and just tried a suppository. We're waiting for the result and hopefully he will be feeling good and tired for a good nights sleep. He really hasn't slept much today at all so he should be worn out His feeding schedule is being adjusted due to his discomfort and in preparation for when we are able to go home. Currently during the day he has a feeding over 2 hours then has two hours free. However tonight he has two back to back feedings (8:00-10:00 and 10:00-12:00) then nothing until 8:00 in the morning. The goal for home is that there will be 6 hours where we don't have to give any medication or food so we can get some rest.
PS- Why do haircuts always make kids look older?

I had to take this picture to give a visual on how huge the syringe is that the nurses used to pull out air.

1st Haircut! Thanks Alisha :)

Charlie's hair was getting kind of long and mullet-like so our friend Alisha agreed to come to the hospital to fix the problem. We put him in a physical therapy chair and she worked her magic on the majority of the head then I held him so she could get the mullet in the back. Of course he didn't like having his haircut because it involved moving his head but he looks so handsome, it was worth it. Rob gave orders for "high and tight army haircut" but I thought Charlie's shunt and scars needed a little concealment so we left some length on top. His hair still has a strawberry tint.

Charlie's swallow study has been postponed once again until tomorrow but this time it wasn't because of him. I guess all swallow studies have been rescheduled, I think the therapist is out today. So we will all have to wait some more. He has been pretty upset since 9:30 this morning. He just grunts and kicks his legs a little. I don't think he likes the sensation of his tummy being full again. The doctor has slowed down his feedings to run over 2 hours to see if that helps. The nurse also is sucking out air from his tummy periodically during the day so he doesn't feel bloated.

Hoping for the Luck of the Irish today...

I got to the hospital about 4:30 yesterday afternoon and found our little guy sleeping soundly. He looked so beautiful and peaceful. Well, that lasted until about 7:00 pm and then he awoke and was not a very happy little boy. At 8:00 his meds were given including his melatonin and out he went with a few wakes by the nurse for checks, feeding and braces being adjusted. It seemed like I was in for a good night but once again Charlie let us know that he was in charge. About 12:30am (you could have called, Jill) he woke up and decided to be fussy. You see, Charlie did not receive his scheduled Clonadine at 12:00 (that is his favorite) due to a slightly low blood pressure. Charlie continued on for fussing and agitated (possibly storming) until 3:30. The nurse suctioned the mucus and then readjusted him, diapered and for the second time in the night changed his bedding as he had sweat it through - just to add to the stench. At 4:15 he finally went to sleep and at this time his is still asleep. Dr. Such-Nieber came this morning and said hat they maybe were too aggressive in giving his food too fast. They are now going to give him his five feedings a day with each taking 2 hours instead of 1 1/2 as it is now. The goal is to get them less then 1 hour or some even go to 15 minutes. Also, they will work to get his meds grouped so that they will not give any during a 6 hour period during the night. But that is the goal.

TODAY: They will try to do the swallow test on Charlie at noon today but have scheduled some PT first to see if they can keep him awake. Hoping for the luck of the Irish on that. Grandma Kathi

Good Morning :-)

Two blessings in Rob’s world today. One, Charlie did fantastic again last night. The Principal was here last night w/ him and reports that from midnight on he slept quite well w/ only occasional moments of irritation. He’s out cold right now and looks super peaceful. The one common denominator in the last 3 nights being good for Super Cooper is the addition of Melatonin to his P.M. regimen. If that is indeed the case his old man will have to restrain from being entirely irked because Melatonin was supposed to be added to his Rx buffet a while ago and some doc overlooked it and never got it on the menu, until 3 days ago. Melatonin is a OTC med that helps w/ sleep and how long have we said that Charlie has his days and nights mixed up? I’m “keyed” (Britton’s new word for excited.) that he is on the med now cuz it seems to work right proper. Charlie had another bath yesterday which was sorely needed. I’m in awe at the amount of odor that a little infant can produce just by laying in a bed and drooling, it gets pretty funky. Another new smell that we have here in Redskins Country is his breath, OHHHH MYYYY GOOOSSHHHHHHH!!! Since they pulled his feeding tube back to his stomach his breath smells approximately like, how to put this so to be both eloquent and descriptive, well it smells like BUTT. The reasoning we are given is that he hasn’t had food in his stomach for over a month and he has a surplus of raunchy juices that need to be dealt with and over time his oral aroma will improve. Thank goodness, I was about to give you all a stock tip so you could buy into Listerine because I thought I was going to have to buy mouthwash by the barrel.


The second blessing in Rob’s world is that when I got here this morning I was going through some to the cupboards in Char’s room and found some Peeps that I bought right after we came to Neuro-Trauma, and of course I opened them over a month ago as to let them age in true Marion L.E. Nordfors fashion, and they were in perfect condition. So for breakfast today it was Diet Coke and six boxes of Peeps that were just stiff enough that they didn’t break when you bit them. A little taste of heaven. No I’m not sick, I’m like a Peep alcoholic, I have a 32 year tolerance and an iron gut. Ramon the Tech and I are concocting a way to get a peep in Char’s feeding tube, I think it’s only fair and Gammy would want it that way.