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

Early morning update :/

Charlie woke up from a wonderful nap about 30 minutes ago. His O2 levels were dropping slightly during the night which kept setting off his alarms. We think that this was partially due to his positioning but they finally got to the point where the nurse decided they needed to be supplimented a bit. She put him on a nasal cannula which made him less than thrilled and he promptly woke up. Once he woke up, his levels shot up to the high 90's and she took the cannula off. He was only on it for a very brief period of time. Since he was awake, Jenny changed his diaper(which was a good one so they say), vented him, and checked his residuals which were less than 10! That is awesome for Charlie. That means his body is tolerating the feedings a bit better and in a few hours when he is less agitated, they will try and up them a little. Right now he is trying to calm himself down until his next round of meds which will be in about 15 minutes. Other than that, he has had a fairly decent night. His mama should be happy! -Shani

Rise and Shine! :)

Charlie started to stir around 12:15. This happened to be perfect timing as it was time to take his vitals and give him some more medication. Luckily, his blood pressure got just barely high enough to allow him to recieve his Clonidine. Jenny(Charlie's nurse) let me give him his meds for more practice. I figure that if (as his treat aunt) I can't give him oreos, Clonidine is the next best thing. It's pretty much candy to him anyway, right? We decided that since he was awake and it would take about 25-30 minutes for his medication to kick in(since it is given through his feeding tube not his PICC line) it was a perfect opportunity to give him a bath. He had a good long soak in the tub and would periodically relax in between his grimaces and cries. At one point he even started to dose off. After his bath, we wrapped him in towels and I got to hold and rock this precious angel while nurse Jenny changed his bedding. After the bedding was changed, I diapered him and lotioned him while Jenny and another nurse cleaned and re-bandaged his PICC line dressing(which ticked him off and kept his little legs a kickin)! I then learned how to clean and bandage his G-tube dressing and how to hook it back up to the pump. Jenny brushed his two little teeth, suctioned his nose, and vaselined his lips. Whew! What a process. After putting his baby leg socks back on, we positioned on his opposite side and cushioned him like a baby burrito. At this point, you could tell his meds were kicking in and he mellowed right out after tucking a blanket around him. Right now, he is sleeping once again and smells so clean and fresh! What a sweetie. I love this little man so much!

I love his little furrowed brow when he wakes up.
Getting madder.......
TICKED OFF!

His little neck rolls have to be washed especially well since he keeps his head down, not allowing the area to air out.
Snoozing during his bath
After the nurse brushed his teeth, he kept making little sucking motions with his mouth like he was trying to taste the toothpaste. It was cute. On a side note, when the nurse was carrying him to the tub, he did a big wail that sounded like he was saying "Maaaaaaaaaaaam" (mom). At least that is what we thought it sounded like. It's since its our story, we're sticking to it! -Shani

Get in my belly!

Charlie has gone from mellow yellow to sawing logs. Hee Hee. I can't believe how loud this little man snores. We are going to hold off for a bit on the bath so that he can utilize such a good nap! I love this nurse up here! I have been bombarding her with questions and she has answered every single one thoroughly. She also taught me how to vent his tummy and to "check his residuals" which(call me gross, whatever) is kind of cool. Basically, you pull all his stomach contents out including the bile and partially digested formula and measure how much is there. Half an hour ago he had 30 cc's which the nurse said is okay but not stupendous. Ideally she said anything around 15 is great, but they prefer to keep the number below 30 or so. She then taught me how to give him his meds and flush the tubing. I was surprised when she handed the meds over and closely watched as I pushed them to practice. Luckily, it is very similar to how you push meds through a normal IV which I have some experience with. The only difference is that you don't have to worry about keeping a sterile environment with his feeding tube because the stomach and colon are not one bit sterile or are they even intended to be! She then walked me through the basics on the pump and is going to find me some handouts so I can study up for when he goes home. I have already learned so much! Whew. I swear this nurse has as much energy as I do. Is that possible? -Shani

Mellow Yellow

About 9:00 I came in to hang with Jack Jack Attack for the night. Apparantly Angel laid down the law before I got here, because he is out like a light and behaving properly for the most part. His nurse and I talked about our big plans for the night which so far includes: Giving him a tubby around 11, showing me how to clean and administer meds through his feeding tube so I can be a bigger help to Angel and Rob when he gets to go home, and working on raising his blood pressure a bit. It was a little low when they took it with the cuff on his leg and even lower when they tried it on his arm. The tech went out and got another machine to use that produced a BP of 63/29. They are more satisfied with this number, but will continue to monitor it frequently to make sure it keeps at LEAST within this minimum range. Other than that it appears that Charlie was tipped off to the fact that I had an energy drink rush prior to arriving, in anticipation of a possible "I am awake and you will all know about it" moment that he sometimes throws at you. I have erred. I feel like the amped up squirrel on "Over the Hedge" and as you can see in the pictures below, I am hangin out with mellow yellow! Anyway, I love hanging out with this sweet boy and could watch his angelic face sleeping for hours on end!

P.S. I may be flooding the blog with posts tonight. We ADD people have to keep busy and a girl can only read books for so long! I apologize now for any excess posts about nothing I conjure up throughout the night! -Shani

Good Day! :)

Today was a good day! Grandma Kathi held him for a couple hours this morning then he relaxed a little for me to practice changing his G-tube dressing and vent his tube. Afterwards it was off to PT with Janine and worked on staying calm while being rolled from side to side. He still needs practice in this aspect but he is getting better. Then after therapy Grandpa Brian rocked him while rubbing his feet and he fell asleep in his arms. He swears the foot massage is the trick. I will have to try it. I wish I had my camera but I took it home on Tuesday and it’s somewhere in the new move-in chaos. He fell asleep for a couple hours and then got his daily dose of love from Grandma Cheryl. He is lucky to be loved so much! They are going to look at his chest x-ray to see if his stomach is on the film as well so that he doesn't have to go for a separate x-ray. He is still on ½ pedialite and ½ formula but we have graduated to a speed of 30 cc/hour. The nurse Emily (she says "hi" to Danielle and Lacie and Glen McKay) has been fantastic. Of course it helps that Charlie is her only patient today and he has been on his best behavior. She helped me “check residuals” and he seems to be emptying his stomach OK on this speed. Because the feedings are lower than what he needs, the difference is being made up through IV fluids. I have told him that he has to have a good night and behave for Shanilla and that if she tries to sneak him any treats through his tube that he should just say “no”.

Possible Blockage :(

He was a little fussy all night even without anything in his stomach. He recieved Ativan at 2:00 am and then settled down. Dr. Such Neibar has added Prevacid to his medication list to help his tummy feel better and is going to check for a blockage to cover all the bases. She said there is a "small" possibility of a blockage that may make the process of moving food through go slower. He will probably go for a stomach X-ray today to see. His Miralax has been decreased so if he does have a small blockage the food won't just go around it so we will have a better clue. The nightly suppository seems to be doing the trick just fine. His feeding is currently back on half speed (20) and he looks to be slightly uncomfortable but not too bad. Now that the storming is a lot less severe and he is tolerating touch more, we are asked hold him more often as part of therapy. Sounds like good therapy for us as well as Charlie.

Wed Night :-o

Today Charlie had a couple adjustments. His clonadine has been stretched out to every 6 hours and he has tried to go back on to formula. He had a pretty good morning and then in the afternoon started to get fussy. Aunt Susan asked the nurse to vent his tube and when they did there was a lot of pressure and some backed up formula in his stomach. The nurse turned off his feeds for one hour and he calmed down. Then the feeds were resumed at 1/2 speed (20). The chest X-ray came back great! So that is a relief. I am starting to learn how to care for his g-tube with daily dressing changes and how to give medication and formula through the tube so I am proficient when we go home. Tonight about 9:00 the nurse checked what was in his stomach again (called checking residuals) and there was backed up formula so she turned off the feeding and consulted the resident. The resident said to go back to IV fluids and Dr. Such-Neibar would come by first thing in the morning. Now an hour and a half later, the nurse checked the contents of his stomach again and it is finally empty.

The audiologist came by today to go over the different options of cochlear implants. He is recommending 2 different kinds because of their ability for feedback that doesn't require patient cooperation. It is so incredible that this is even possible. I'm so amazed! The operation takes about 2 hours and the biggest risk for Charlie will be going under anesthesia again due to his decreased mental capacity. He has had 3 surgeries so far while at PCMC, but this one is more elective so it is a harder decision. The last surgery was a little more difficult to come out of anesthesia (that is when his BP started to go low) so it something that Rob and I had to carefully consider. We feel that his quality of life would be increased even by partial hearing so right now we feel it is worth the risk. The doctors also feel he is medically stable enough and have been great advocates for the best possible outcome. I think the surgeon, Dr. Warren, will by soon but it is the audiologist that does all of the programing of the implant and all the hearing training afterwards. The device will not be activated for a month after the implant and then Jason said it is usually up to 6 months before parents report that the child can hear.

Sweet dreams everyone...

Wednesday Morning

Coop was so relaxed last night around 1:00am that we were worried about his low blood pressure (66/24). The nurse and I took turns trying to wake him up. We put all of his splints on, wiped him with cold cloths, sat him up and held him, sternal rub etc. It would wake him a little but not for long so she called the resident. He said to keep an eye on it and we held the 4:00 dose of clonadine. When Terry Such- Neibar came in she said our goal was to stretch out the clonadine so since we are holding it so often due to low blood pressure she is going to change the dosing schedule today. He did really well last night with the pedialite and formula mixture so later today we will change it to all formula. Terry was glad to see him kick his legs a little this morning.

In preparation for the implant surgery on the 31st we will be checking for any signs of infection that would stop the surgery from happening. A chest x-ray is scheduled for today and lab work will be taken on Friday. We really want to keep him healthy until after the surgery otherwise it will have to be postponed and they currently only have one spot reserved for us. So they/we are asking that if you are sick or have been around sick kids lately please call or post a comment instead of visiting. Thank you everyone for understanding.

Pedialite Rules! :)

He had a really good day today. Two times he was awake with eyes open and not very upset for almost an hour each then went back to sleep. He has stayed on pedialite all day today slowly increasing the volume to 40 then if that goes well they will change to ½ pedialite and ½ formula at 2:00 in the morning. They have now added erythromyacin to help move things through his gut and we are doing a suppository every night to make sure there is room to move things through. I guess last night was the first BIG poop he has had since surgery so we gotta get things movin.

Because he was not having formula today, Neale (OT) felt like it was safe to take him to the gym and jiggle his tummy. It had been a long time since he had been out of his room and he needed to get his body movin. I love watching in the gym because I get to witness the small things that I didn’t know he was capable of. I wish I had my camera because it’s difficult to explain but I’ll try…Today he was in a big barrel made of mats and Neale rolled him barely onto his side and he would arch (posture) and kick his legs to get back over to his back. It was the arching/posturing that got him over but Neale said it was purposeful and he kicked his legs figuring that they were supposed to be helpful in that situation. Coop did it 5 times in a row and was mad every time. I was so proud of him! Neale and Janine both commented on how he is calming himself more quickly where before they would move him it would take a long time to get him relaxed enough work on the next skill.

I am still excited about the implant however, Jason Norby, our audiologist, came by to talk a little more about the conference. He said the committee all agreed that because of the multiple disadvantages Charlie may face he needed to have every chance possible for interaction and imput. He also said the committee felt one implant was going to be challenging enough that they did not want to try two. The one implant he will receive will probably not be able to be inserted through the entire cochlea because of tissue build up so the electrode connections will be more limited than a typical implant. Another difference from typical implant patient is that Charlie will not be able to communicate if he can hear the signals or if they are too loud/soft because of his decreased mental status so the audiologist suggests going with a model that can give signal feedback so they know the signal is getting through. He will come by tomorrow to go over different manufacturers and models. There will be extensive training afterwards to program and teach Coop how to process the sound but this will not start until we are a little more stable and alert.

Coop and I were lucky enough to see Dr. O today (-just a “social” visit, not because Coop has any more infections, thank goodness-) while he was in the hospital for a meeting. We always love seeing/talking to him- the reason I know Charlie does is because he was very calm and was even twitching his eyes as if he were having a pleasant dream the whole time Dr. O was in the room. I updated him on the implants and he said there may be a need for some additional immunizations prior to the surgery so Jason is going to look in to that. Thanks for the care and concern while off duty; it means a lot to us.

Hooray!!! :)

The cochlear implant committee met this morning and Terry Such Neibar just came it to say they have agreed to implant one ear on the 31st! Yea! I must admit I was really worried that the decision would be to either wait or not implant at all. I just think that Charlie has so much against him regarding sensory imput that I want him to have any advantage available to maximize his quality of life. He may not be able to see, or process what he sees, he may have severe learning disabilities and he may have difficulty with body control making it difficult to do sign language. All of these are possibilities but each would make communication difficult in themselves let alone coupled with others. So I am very relieved but also a little nervous. It does come with risks such as.... MENINGITIS! Yes implanting a foreign body into his ear will increase his risk of future meningitis. I will hear more about the risks later this afternoon from the audiologist but I just wanted to let everyone know as soon as I heard.

Just the bare facts...

Last night about 9:30, Charlie started not liking his food so bad that he started spitting it up. He kept spitting and even sometimes it got in his throat that he seemed to stop breathing. After Jared and I suctioned several times the nurses came in to check and Charlie did his trick for them. The nurse, Amy, immediately called for a dose of anti medic to stop the vomiting. She stopped the feeding, suctioned him really well, administered a suppository, and then after a dose of adavan he settled down. About 11:30 he went to sleep and decided to have a good nights sleep. However about 4:00 he awoke and started a little fussing and had a huge blowout diaper - great! At 6:30 the nurse started him on Pedialite and he is sleeping soundly right now.
Dr. Walker (I think that is his name), the cochlear doctor, just came in to see Charlie before he goes to the meeting to discuss Charlie and Cochlear implants. Dr. Such-Neibar joined him and they talked just to gather info. After Dr. Walker left, Dr. Such-Neibar talked about Charlie's feeding and noted that it was probably normal to regress after surgery and now that he has pooped real good we will go forth. She suspected that the medication given during surgery on Friday was the cause of Charlie's system backing up and now that he has got his system going, he should start seeing improvements in digestion with his formula. What a doll he is and I loved spending the night with him. Grandma, Kathi

Morning update :)

Coop was on pedialite all night because the nutrition room was locked so the nurses didn’t have access to his formula. I think he liked the pedialite. He slept great! He woke up this morning and has been a little agitated since 8 and they have restarted his formula. The resident would like keep the same rate of formula and see if he has any trouble today. Nothing else to report.

Easter Eve :l

Coop is back on continuous feeding at a very low rate (20/hr) with the new g-tube. Earlier he started fussing so the nurse let the tube vent, which is like burping out of the tube to release some of the air in his stomach. It's definately weird but it sometimes is all he needs to feel better and calm down. The weird part is that even though it comes out of the syringe it sounds like a real burp. When the tube was vented this afternoon, 20 cc of mostly formula came back up into the syringe so the nurse turned off his feedings for an hour to allow his stomach to empty. (That is an hours worth of food still in his stomach that hadn't drained) Then a hour later, he checked for any residual food (none left)in his stomach and then restarted the formula. Around 7:00 tonight I was rubbing Charlie's left cheek (thanks for the tip Jolene) to calm him a little and he vomited clear fluid which looked mostly like mucous so the feeding was turned off a second time and he was put on IV fluids. He recieved a thorough suctioning and a suppository and a half hour later he did the same thing, this time I thought it had a slightly sour odor. Since the bedding had to be changed again and the nurse was worried about aspiration while lying on his back, I held him in a sitting position while in the rocking chair for over an hour. His oxygen level mostly stayed normal and his lungs sounded clear after suctioning so we just rocked until the suppository gave me a false alarm. He has now been asleep for an hour after Ativan but hasn't pooped yet. The nurse gave Reglan to help settle his stomach and he has started back on the feedings. Despite having to be in the hospital, I have had a really good Easter hanging out in Charlie's room watching him sleep or fuss....either way...I love him so much.

"hOpPy" eAsTeR !

Coop has been awake and upset since Britt and I got to the hospital at 9:30. He had a sponge bath because he was sweating so badly so at least he smells good. He was started back on continuous feeds last night around 11:00 after he calmed down. The nurse had tried turning it off earlier in the evening since nothing else was working.

Happy Easter Everyone :-)

Last night was solid. Charlie was exhausted from all the effort he put into being a naughty boy yesterday and I was able to reap the reward with the most restful night at the hospital yet. Charlie fell asleep right after one of his girlfriends (Roxey) left and he slept till 0100. He started working into another storm so Rob, the RN not the Dad, hit him w/ a little ativan and he was out again. It’s 0915 and he’s just starting to wake up giving him a grand total of 10 ½ hours of sleep last night. How cool is that? Maybe he knew he had to be a good boy for the Easter Bunny to come and luckily he did. The hosp. and volunteers brought in an Easter basket for Charlie this morning, all the kiddos got one, and now we will see how much of it Rob, the Dad not the RN, will eat for breakfast.

PS. Did you all know that The Coach, Bronco Mendenhall, came up to see my boy the other day? He gave me his wristband. Go Cougars!