running for coop

Well it sounds like coop had a pretty rough day I guess he has been mad all but about three hours today but with the help of Kathy, Ann her mom some sisters and a ton of bum patting he is now sound asleep Jenny has had him off his feedings since about eight because of the huge amount of meds he gets then. Since it has been such a long day I figure he should sleep like a log all night but he likes to keep us guessing so that is what I am crossing my fingers for.

So I was talking to my geriatric sister today about this run/walk thing in may and you get a shirt for signing up but we want to make a special shirt for the people who are doing it for Charlie so we need everyone who is coming to email us shirt sizes this weekend so I can have enough time to get them made so email Susan at (amalongman@aol.com) I will make extras but please let us know so everyone can get one.--Uncle Jared

I'm proud of Coop! :)

Therapy was so great today. Neale had Coop on his stomach and because he didn't like the floor pushing on his tube he bent his knees up to be underneath him. His face was still planted on the floor but this is a big deal because he did not posture (arch his back and straighten his arms and legs) in order to get out of a postition he actually did the opposite of postureing. We were so excited that I didn't even get a picture of it.

However he did great at this move as well. Neale had him laying face down on her leg and as he got mad he would push his arms straight to lift his head off. He was able to bring his head up to baseline while pushing his arms straight, but then it would flop backwards.

It's a lot of work for a body that has been through so much and does not move like it used to but it is still my favorite part of the day because I always see progress. After he worked out with Neale Charlie had a enema to clean out his system then a bath and then a clonadine induced nap. By 4:00 he was ready for another workout with Janine. Charlie worked on helping roll his upper body (arm and head) while his lower body is being rolled by Janine. She also noted that he is starting to grit his teeth (he only has 4) so he will probably be fit on monday with a mouth gaurd.

Snuggles with Janine after a good workout. Trying to get Coop to help pull his head up when being lifted off the tableBicycle moves with Janine. Janine would irritate his feet one at a time and Charlie would pull it away like he was riding a bike.
So he is now taking another nap in Grandma Cheryl's arms after working so hard. The ear surgeons came by today and took off his bandages and said his incision looks great. We did not see the GI doctor yet because he had to order some special tubing to convert the g-tube into a j tube. When that arrives (maybe monday) he will come talk to us and get him scheduled for changing over. Charlie seems to be tolerating his feeds and is up to 50cc/hour at full strength. The plan is to work him up to 80 over the weekend so when we go home he doesn't have to be fed at night.

Rob had to work in Oregon this weekend so I just wanted to share what was happening in Char's room while he was gone. Charlie misses you!

This Bronco outfit is from Shannon- "the hog doc"

The coolest kid ever

So I arrived last night about seven and cooper was having a party Rob, Ang and Britt were here Troy and Andrea showed up with dinner and I got to hold coop while they ate and played guitar.They all left and Charlie was not so happy about it so he fell asleep about eleven. They were a little busy here last night so he decided to be up about five times throughout the night to make sure they didn’t get to relax at all. He woke up about six thirty and was not happy at all so we started the rocking and bum pat and by seven we were both asleep in the rocking chair the doc’s let us sleep for about three hours. He is awake and waiting for mom and dad to get here the doctors haven’t done much this morning while we were sleeping but they should be back shortly, so let’s hope for a good day and Charlie steps forward.

Also for any of you who haven’t seen this bum pat thing it is crazy as long as you are patting his bum he is very happy for the most part and the second you stop he is totally ticked off it’s the weirdest thing ever.--Jared--Jared patted Charlie's bum to keep him happy non-stop for over two hours so I think he may be a little sore today. Thanks Jared. You are a good uncle!

I shoulda, coulda, woulda posted at 7:00am when I was thinking of it but thought that I would wait for the doctor to come and give us more info. Well she came in and said that he seems to be tolerating his food now that it is going directly into the jejunum instead of his tummy. So the plan is to have him receive a GJ tube. That is when the food will go into the g-tube in his tummy and straight to the jejunum (small intestine). This will mean continuous feeding but also working to progressing towards the g-tube feedings. (I hope that my lay understanding is right for those of you that really do understand all of this)

Last night Charlie had a good nights sleep. However the rest of us had more trouble. Around 10:00ish he settled down for the night and slept on. About 1:00am the nurse said that he hadn't peed for too long and they needed to see what was happening. A machine was brought in to ultrasound the fluid in his bladder - not much. Then my little man was catheterized - none. So, next the IV team was brought in to give him an IV in his right foot (He kinda let them know that he did not like that),and fluids were given til this morning and he resumed peeing. That maybe too much information. Basically, Charlie slept through all of the until around 7:00 this morning.

Most of the morning I have been holding him and he is calm when I do the assigned "bum pat". When I lay him down (as he is now), he lets me know that he wants more holding and "bum pats". I will oblige. Grandma Kathi

Late night fix...

For those of you that are addicted to this blog as I am and have to check just before bed, here is what has been happening tonight. I arrived at around 7:00pm and Charlie was just starting to settle down for the evening after a very anxious day. Poor kid had been miserable for too long and probably was just worn out. He did, however settle down but stayed awake. Grandpa Barlow rocked him for some time and then it was time for the big tub. What fun!! He really doesn't mind it - even when his hair is washed. After the bath we massaged him with good smelling lotion and changed his dressing. He mostly liked the massage and lotion. Next we fluffed his bed and off to sleep he went. He is very peaceful now at 11:30pm and I am assuming that the NJ tube is the answer. Maybe it is the stomach that is causing the agitation. What a sweetheart he is. Sleep tight everyone... Grandma Kathi

Wed. Update

I'm sorry for the late post but I have been holding Coop since the Dr's assessed him at 7.

Charlie had to have his feeds turned off 3 times last night due to not emptying his stomach. Dr. Such-Neibar came in today to give me the plan. We are going to place another NJ tube (a tube from his nose to his intestines that bypasses the stomach-what he originally started out with in the PICU). We will leave the g-tube in place and start feeding though the NJ to see if it makes any difference. If he tolerates it well, then we know the stomach is the problem (reflux or not empying) and we could convert the g-tube (directly into his stomach) to go to a GJ- tube (a tube that would go from the stomach to the intestines). If bypassing his stomach doesn't make a difference then we have bigger problems (like the intestines may not be working right).



I have a theory on this whole gut issue but I haven't verified it with the doc's so I may be dreaming but here it is. We were explained the "storming" as a automatic fight/flight response (like when you encounter a very stressful situation-adrenaline release) where your heart rate, blood pressure and breathing all increase, you sweat to cool the body to prepare for flight, and your body stops digesting. We have been thinking that Charlie gets mad/agitated because he his food is not digesting and is full but I'm wondering if it is the other way around and he is not digesting because he is mad/agitiated (storming). It probably doesn't matter either way because it still isn't digesting but they say that the storms will go away eventually so if this is right the stomach problems should go away too.

Tues night :(

I wasn't here on the day shift but it looks like no one posted todays updates probably because there isn't much to report. I got here a couple hours ago and Rob who was updated from grandma Kathi said he has been really fussy for a while. He is sweating like a mad man again and moaning so I tried holding him upright for a half hour but it didn't make much of a difference. Dr. Such Neibar has change his clonadine orders to every 4 hours if needed so we don't have to try to wake him up (so his BP is higher) just to give him a medication that is supposed to help put him to sleep. We are going to talk tomorrow about adjusting some of the goals for when we go home. I'll update you tomorrow after I talk to her. Because he has been storming/sweating so much he totally stinks. I think I'm going to give him a bath soon since he is already upset. The nurse gave his clonadine 45 min late (not because he was doing well, just because she has been busy with other patients). Now 1 1/2 hours later still no change in his agitation so she checked his residuals and he has 65cc in his stomach. Per orders she is stopping her feeds for 30 min to allow time for digestion. He did have a diaper blow out earlier this evening so he couldn't be too backed up.

Addendum: The nurse stopped his feeds at 10:15 and then an hour later the tech came in and vented his tube and checked residuals again and it was 30cc. We are going to wait 30-60 more min. before starting him up again because we still feel that it is a little too much. One hour after stopping the feeds (11:15) he calmed down and is now asleep with his legs bent.:) It s such a welcome sight after being so upset for >3 hours. If this didn't work we were going to resort to Ativan even though we are supposed to try not to use it anymore. Now I just hope it doesn't interfere with his midnight clonadine dose.

What a Little Sleepy Head:)

Wow!!! My little Charlie really had a great night. When I arrived here last night about 10:00pm he had just had his clonadine and Rob was cuddling him to settle him down. He was just about sound asleep when Rob left. And then into a deeper sleep he went. Around midnight the nurse and I talked and decided to wait for his usual midnight dose of clonadine. She said that since he was sleeping so well we would wait until he wakes or gets restless - maybe around 2:00am. Well my little man slept right through that and continues to sleep now. It is 9:00 and he has slept through diaper changes (both pee and poop), meds and repositioning. (He must have been really worn out from yesterday. )
Dr. Such Neibar just came in to say that they will start his feeding at full strength this morning and it seems that any time his bowels slow down, it backs up and his tummy starts hurting. So, a suppository will be given each day to make sure this doesn't happen and Little Charlie's system keeps going. This can be done indefinitely. She also said that the clonadine will be given every four hours. If Charlie is sleeping - there is no need to just give it to him. She is looking at him being able to go home "maybe at the end of the week or next week". Especially if he has more nights like last night. The family will need to sleep too.-
Grandma Kathi

a new theory

Today has been getting better as it goes on. When I arrived this morning he started to get really agitated. I think in conference this morning they talked about what we can do to get Charlie’s bowels working again and Neale (OT) said that if we do more passive movement with him it may help move things along. Neale and I have also come up with a new theory to break him of the posturing/stiffness cycle. Lately when Charlie is awake he postures and moans for a few seconds then relaxes for a few seconds then postures, then relaxes etc. Our thinking so far has been that when he is agitated we leave him alone as to not stimulate him and when he is asleep we hold him. Now we are trying the exact opposite. In order to break this repetitious cycle she suggested that when he postures we hold him in the opposite position (fetal position) to teach his brain that it is OK for his body to be contracted. So, today anytime Charlie was awake I held him in on contracted position or another. He would resist and then relax over and over until he fell asleep. I think it might take a couple days of this to see any results but I’ll let you know how it goes. I’m also wondering if he has reflux even though he is on Prevacid so I mostly held him upright. He had a 2 hour nap after the noon clonadine (which I put him back in his bed in a fetal position) and then was awake again so I did the positioning again until he fell asleep. He has now been asleep for 4 ½ hours is super relaxed sleeping on Grandma Cheryl and Dad. He was so relaxed that he wasn’t able to get his 6:00 clonadine but so far he hasn’t noticed. I’m not sure if this new theory will work or not but at least I feel like I’m trying something. Neale said there are some research articles on this type of therapy but I’m not sure what it is called. His feedings are currently on full speed but half strength (1/2 pedialite and ½ formula) and his residuals have been OK.

Thanks Dave! :)

Last night as my mom ran me home due to some misplaced keys and this is what she saw when she returned to the hospital. Dave, Charlie's nurse, was rocking him in the chair trying to calm him down. It was so sweet and loving. This is just one example of how great Dave and the other staff is here at PCMC. While we were in the PICU during the first two weeks of this experience I saw a nurse on night shift put a little girls hair in sponge curlers because she knew her mom like her hair curly. They take the time to do the little things that really mean the most.

You ain't cool unless you have splints

Toughing it out

Charlie had a pretty mild evening except for one little tantrum. He recieved his Clonidine at midnight and he was out for the long haul. Around 4:30 he decided that he deserved more Clonidine, but the nurse disagreed which prompted him to throw a tantrum. We had a little heart to heart with Charlie and he decided to tough it out without Ativan until 6:00(the nurse didn't want to bottom out his pressure with the Ativan making it so he would miss his Clonidine which is his fav). He toughed it out and made it! What a rockstar! His tired body along with the meds made him fall asleep almost instantly. And that is where we are now.

It is 8:30, and so far he has had his morning meds, a significant repositioning of his body, vitals taken, all his splints put on, and a visit from the doctor. And he is still sleeping the morning away with perfect SATs and pulse of 90! Yahoo! The doctor says that she would like to start him back on his 50/50 feeds and get the IV out as soon as possible because he did awesome on his diaper output last night. As soon as Charlie wakes up I plan on telling him this good news as he is bound to be excited. Also, the doctor will be allowing him to recieve his Clonidine at 5:00 instead of 6:00 if he gets as agitated as he did last night. Even though the goal is for him to be med free from 1200-600 a.m., she says it defeats the purpose of his mommy and daddy getting sleep if he is having a tantrum for an hour before his meds. I will not be telling Charlie this news as I know it will make him straight giddy and potentially have him try to manipulate the system. If the little man knows that he will get his meds early if he fusses, he may start trying to stick it to the man and work on getting them at 4:00.

Anyway, that was our evening! I hope to be able to hang out with Jack Jack for many evenings to come but at his house instead. I told him that I need to be able to sneak down to the kitchen for a snack and the rainbow cafe is just way too fickle with their hours. Charlie knows how I get when I'm hungry! Love you sweet baby! -Shani

Big blue eyes

Besides being mildly agitated, Charlie has been excellent. As I was sitting here being one with my thoughts, I grabbed Angel's camara and started looking at the pictures as I have done a million times. This time however, I almost cried when I got to these sweet pictures. His big blue eyes and huge cheesy grin is so refreshing to see after getting used to his grimaces and pouty faces. I wanted to put these pictures on here to remind everyone of the happy little boy we are praying for, and that despite the sickness that has powered his body for a few months, this is the sweet little Charlie that is still there somewhere. And that gives me hope. -Shani

Sleepy Charlie

Well, the over-zealous blogger is in charge tonight, and just as I suspected, he is chillin like a villian(a.k.a. zonked out, sleeping like a baby, sawing logs, etc.). Although I hope he stays relaxed and mellow all night, I am set to go with chocolate pie, a novel and ready arms to hold him, and of course....good old reliable caffeine. Sorry mom. I promise I am working on this addiction contrary to popular belief. Anywhoo, I am ready to update everyone with every little peep he makes. If he makes one. Pray for a break for his little body. According to grandma Kathi he had a bit of a rough day! -Shani

Caroline Kisses and Grandma hugs :)

He is still fussy but not as much. We gave Charlie a suppository and an enema with average results. We were expecting a blow out but it didn't happen. Sweet Caroline (Whittney's little girl) said all he needed were some kisses and he would feel better so she obliged. He did calm down for a minute but then I think he was crying for more. He is currently being rocked by grandma Kathi and is starting to calm down after getting Ativan. He was sweating so bad earlier that the tape holding in his 3rd IV came off and he now has a new IV in his left foot. So in the last 24 hours every extremity has had an IV in it for a short time. I also noticed the other day that Charlie has two new top teeth coming in. They have broken through but with all the medicine he is on, I doubt he even felt it.

Shannon, our favorite resident, explained that it is very common to have diarrhea and then be constipated because at first only the liquid (diarrhea) can get around the blockage and then as it progresses nothing gets through.

So tired....

On a road trip to X-ray

Me that is. Charlie did not behave last night at all. He got all worked up while Aunt Erin was here then when I got back to the hospital he vomited/spit up yellowish sputum (the nurses think it may have been stomach acid) twice. So I held him in the chair to keep his head up and decrease the risk of aspiration. He calmed down with the patented “Jeri Sterling bum pat” and fell asleep for 1 ½ hours while I rocked him. He was mad throughout the night except between 2-4 and from 6-8. His feeds have been on and off all night depending on how much residual is measured. If he is off feeds for more than 30 minutes, IV fluids are started to make up the difference. He has lost some weight (7 oz) so they want to make sure he gets as many calories as possible.

Answers to previous questions= I asked a couple weeks ago about the lactobacillus and the resident said that he had been off of antibiotics long enough to regain the good bacteria in his stomach but it is well worth asking again. He is on erythromycin to help stomach emptying instead of Reglan because for some reason they don’t like to use Reglan in patients with brain injury.

Update: The on-call doctor just came in and is concerned about not tolerating his feeds. She did not hear any bowel sounds so she has stopped his feeds and ordered IV fluids. I vented his tube and pulled out all the residual (35cc) food in his stomach because his bowels aren’t currently working. We went down for a stomach X-ray to check for bowel blockage and it came back normal except for a lot of constipation. So the plan is to get a new IV (the one in his left foot hurts him anytime fluid is put through it), give him fluids until he poops then start pedialite for the rest of the day. I’m glad to have some sort of explanation to his fussiness although he had diarrhea yesterday morning so how does a kid switch that fast.