Not a Good Day :(

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

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

No News...

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

Patiently waiting :)

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

Waiting for GI-

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

Impressed :)

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

Let's Celebrate! :)

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

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

Me, my Dad and Coop

Aunt Susie perfecting her bum patting technique

Getting closer....

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

Upright :)

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

we might just have it...

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

"Whistling Dixie"

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

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

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

Here's a few pics from the day.

It works!

The "bum pat" ---- it really does work. I spent time Friday night, Saturday morning and this afternoon perfecting my technique. You must pat rather fast and with quite a bit of pressure - wimpy pats don't do the trick. You also must pat his bum - patting on his leg, back or side doesn't work either. He also likes to be on his side, held kind of tight to you while being patted. Caution: no patting with cold hands - he really hates that! When he is sleepy, this technique puts him right to sleep. If he is a little fussy, it calms him and he looks at you with his big beautiful eyes. When he gets aggitated, the patting isn't as effective. However, it will shorten the stiffening, crying cycle. The patter must be in pretty good shape. All kinds of body parts fall asleep, i.e., arm, shoulder, leg, back and bum. Also puts stress on arthritic body parts, i.e., fingers, wrists, shoulders, elbows, etc. It feels so good to be doing something and knowing that you are comforting this precious baby is worth it all. I love him so much! G-ma Cheryl

not much to say

Well this is for all of you who say write anything even if there is nothing to write about. Coop had a pretty good night he woke up about 0130 so jenny changed his diaper and dressings gave some meds and changed a diaper and that must have done the trick because aside from a few little cry’s he sleep till five and after some meds he was back to sleep till about 0800 and is now getting his morning work over. Then I think some rocking and bum patting will be in order till his momma gets here.

And again we need shirt sizes and also we would like know names to go along with them so see the running for coop post for the email address thanks.- Uncle Jared