Wednesday, June 4, 2008

Dr. Visit Update

Tuesday we headed back to Primary Children's Hosptial. We had an appointment with Dr. Such Neibar at 10:00. I had given him Clonadine for the drive because he isn't comfortable being strapped in his carseat. I think it has something to do with the angle it sits him in or the straps pushing on his tube. Terry Such-Neibar was excited about the way things are going although she was disappointed she wasn’t able to see him awake.

Highlights of the visit:

  • Because he is calmer we have permission to adjust his medication times to fit our schedules and start decreasing meds according to his tolerance (although we are not supposed to take him off of seizure meds or reflux meds yet). Instructions to wean off of Tranxene first and then move on to Neurontin and report back in August. Laxatives and suppositories can be given just as needed instead of daily.

  • We should follow up with the Neurologist in 6-12 months to see about coming off Phenobarbital and Keppra if he doesn’t have any more seizures and check in with Dr. Brockmeyer in the next 3 months to check out his shunt.

  • His ankles appear a little too stiff for Terry's liking so she wants us to wear the ankle braces more often. And he head is favoring the right side again so more neck stretches.

  • Now he is 1 year he should be doing standing exercises to increase the bone density and keep the hips in joint since a normal one year old should be standing. Standing also helps with digestion. She wants us to start by holding him in a standing position for a few minutes and slowly work up to one hour a day. One of the therapists will see about letting us borrow a stander like he used in the hospital. She also ordered a hip x-ray as a baseline so we can compare his hip joints and density later on.

    Most of my questions revolved around feeding which was deferred to Dr. Jackson who we met with at 2:30.

Dr. Jackson appointment:

Luckily, Charlie had received his Tranxene and Neurontin at 2:00 so he was pretty sleepy during the appointment. The nurse put a numbing cream around the g-tube and let it sit for 20-30 min and we also gave him Ativan. Dr. Jackson came in and explained the procedure and said it is pretty uncomfortable but is really brief so they don’t feel like it is necessary to do anesthesia. The old tube was cut and the yanked out of his stomach. It was NOT gentle in the least. Sort of like tearing off a bandaid with one big yank. Surprisingly Coop didn’t cry at all but it did wake him out of his deep sleep. Dr. Jackson was an hour late for surgery by this time so I didn’t get a chance to ask everything but I did tell him that I think Charlie was still having reflux issues despite being on Prevacid. When we discussed the dose he said it was far too low for his weight and tripled his current dose to start out with. He said our regular Pediatrician could follow up with the other issues such as consolidating Charlie’s feedings, testing for stomach acid, monitoring weight fluctuations, etc. So unless we have problems with the g-tube or it needs to be converted to a G-J tube then we won't ever see him again. The Mic-key button is low-profile so isn't as likely to pull it out. It is also easier to dress him without the bulky tube. Dr. Jackson said his hole looked really well healed and he didn't see any granulation tissue (excessive scar tissue). Yea!

Because Coop had done so well with his appointments we went to see all of his girlfriends and Dave at the neurotrauma unit. It was so fun to see everyone again and made me miss them even more. By this time the numbing cream was wearing off so Charlie is letting us know that his tummy hurts.

Update on Outpatient Therapies-

VISION- :) A vision therapist (from the school of the deaf and blind) evaluated Coop on Monday. I told her that I have noticed a change in the way he is moving his eyes around although it doesn't seem consistently purposeful. After assessing him she felt that he has "vision awareness" to large black and white contrasting designs but he does not "attend" to anything yet. From what I gather he senses something in his visual field but does not focus on it or follow it when it moves. When the pattern was placed where he was looking he blinked a lot and his eyes widened. He got tired after working with her for about 15 minutes. I was so excited about this news because it gives us somthing to work with. She will bring specific toys next time and a light box to encourage his awareness and hopefully progress to focusing and following. We need to start exposing him to more visually contrasting objects with few details. She even gave him a touch quilt that is black on one side so when an object is in front of it the background of the house is not distracting.

HEARING- Coops implant has been re-programmed and we are looking for clues for if he is hearing anything. This is way harder than I thought it would be. The only clues he gives are being mad or content. When he is mad there are so many other things it could be than loud noises. So far I haven't seen anything consistent in his behavior to make me think he is hearing but Terry said that it may be one reason that he is calmer since we have been home because it is "white noise" even if he isn't processing. The implant is on and sending impulses on the nerves to the brain but his brain may not know what to do with that information or I may not know his behavioral clues yet. I meet with the audiologist once a month to re-program the device so I can try different things and look for clues. He said to plan on it taking a year to work through everything. Also we are having difficulty keeping the device on his head while he lays down because he moves his head from side to side but we are trying to be more vigilant. We also had a hearing therapist (Paula) from the school for the deaf and blind come and is teaching us how to give tactile signals to Charlie to start communication. We are each supposed to choose a touch signal to let him know who is going to touch him (like introducing yourself) because he can't hear of see well enough to know who it is. For example the hearing therapist takes his hand in hers and squeezes 3 times so he will know who it is that is going to be messing with him.
Paula gathered up a tumbleform chair for Charlie to use. It helps to sit up at different angles. Thanks Taylor for giving it up so we could use it ;) It sits on wheels and has a strap to pull so Britt tells Charlie that he is taking him on a ride like they have at Disneyland.

PT/OT- We went to our second PT(Lisa) session today (it took quite a while to get evaluated and set up) but have been several times to OT (Roxanne). I think things are going well. Coop is still working on a lot of the same things as when he was in the hospital. Head control, transitioning from different positions without getting upset, flexibility, bicycling his legs, initiating some movement with rolling. My goal this weekend is to write out a therapy program so we can make sure to get all the practice that he needs everyday.

Speech Therapy-(this is really all about feeding right now)- we have worked with Carey to keep his mouth muscles working even though he isn't using them very much. We are also giving him tastes of pudding and baby food. He seems to chew and swallow when it is placed in his mouth but doesn't open his mouth or lean forward to get more so it may be more of a reflex. He still likes when we put flavored chapstick on his lips and will suck on his lip a little. He likes to chew on our fingers but only occasionally likes to chew on a binky. We still think he may eat through his mouth down the road but like everything else it takes a long time. We are supposed to start doing oral therapy 3 times a day around meal times so he get used to it at different times. She also told me that Charlie's reflux medicine should be taken on an empty stomach or it is ineffective. So it probably hasn't been working the whole time because I haven't been doing that.


Anonymous said...

My daughter has had her button now for months. You will like it a lot, it is so nice. You can give those not so tasteful meds through there :). Roxanne will do wonders for him, she has done so for my 8 month old. we have been with her since January. He is looking so good and getting bigger. Mom you are awesome. Sounds like you are hanging in there. When I think that things are tough on my end, I tend to read the blog it up lifts my spirits. We have such a different story, but are children sure have gone through similar tests and procedures, so it lets me know I am not the only one out there. Keep up the great work Mom and Dad he is looking great. I love your blog so much. My other daughter is sad along with myself to see Mrs. Christensen leaving Valley View. We will truly miss her. She has been a great help to my daughter through are challenging year with our baby. She will always have a special place in our hearts. Keep the Faith my friends.You will continue to be in our prayers. Much Love,

A Bountiful Family

Anonymous said...

After all this time, Mr. Charlie still melts my heart just to look at that sweet face (even when he's mad!) He leaves me full of thoughts, but rather speechless when trying to express how that wonderful boy makes me feel. Hang in there.

Anonymous said...

You guys have been busy! It all seems like such great progress and good news. You also sound like an old pro.

Thanks for the wonderful update!!

whitney said...

Coop has been on my mind today and made me terribly emotional. This post just did the same thing. Ang, he is so lucky to have you as his mom with your love of lists and getting things done, among other things. It sounds like a lot of new info, lots of new things he is doing, he knows you are there and that his house is full of love. Cheesy, but true. That little boy is blessed.

Shannon&Eli said...

wow!!! You guys are have your hands full and seem to be doing so well. Thanks for thinking of all of us and taking precious time to update us! you go above and beyond and definately win the best parent awards!!!

Suz said...
This comment has been removed by the author.
Suz said...

Thanks for all the info Angel. Rob uses lots of words (he is unaware of the correct usage for most of them) but you have all the facts and I love the facts. I am so impressed with your organization and are doing an awesome job. Coop is pretty lucky you are his mamma.

Anonymous said...

AMAZING is the word that comes to mind when I think of Angel, Rob and cute Britt. You are all working so hard to develop you family and to give Charlie every opportunity to progress. You must have had a very tiring day at the hospital, but I'm sure everyone was glad to see you and to see how well you are handling having sweet Charlie home!
Thank you for the darling pictures. I'm sure you get tired of doing update, but all of us love them. You are all HEROES in my eyes. thank you for the love you share with all of us! Many prayers continue for all of you.

Terry, Lacie and Ella said...

That is amazing how much you guys are doing. I bet your days just fly by. I will say that the picture of Brit pulling Charlie in the seat made me smile then get teary. That is so sweet of him to want Charlie to know what its like to ride a ride at Disneyland. I love your little family.

Ginny said...

Angel, that was an awesome update...especially considering how precious your time is! Thanks for keeping the rest of us in the loop.

Anonymous said...

Wow, great pictures again. Thank you for the doctor's updates. Glad that things are going better for "The Little Man", and the rest of the family. Rob and Angel, you are both wonderful parents.
My daughter-in-law got to meet you the otherday at the telethone. Her name is Tristi and she helped with the patients and families before they went on t.v. I told her about Charlie and showed her the blog, so she was excited to finally get to see him.
I continue to keep Charilie and your family in my prayers.
Even though Cheryl will no longer be at Valley View, I will keep in touch with her and the blog on Charlie's progress.


Tammy said...

Hooray. We love our mickey. I am glad to see that things are progressing. That is great news about his vision. Good luck with everything and I am glad that you posted all about your visits. You get a lot of information at them and it is good to write them down so that you can remember what happened.

Tawnia Allen said...

Charlie is an ANGEL! One tough little Angel! It's so nice to be able to read all the updates on him, I look at Charlies blog daily, he is so precious! I work with Keith Gines at O.C. Tanner CO. I made Charlie the little fleece blanket that I call a "snuggler." It states "miracle baby" on it, which that he definently is! Snuggle up sweet boy and have sweet dreams! I think about you and pray for you and your family daily! Love from Tawnia Allen

Steph said...

Thank you for the detailed updates! That picture of Brit pulling Charlie is PRECIOUS! Good job big bro!!

Through the Looking Glass said...

I loved seeing you at the hospital, Angel, and seeing Charlie was whipped frosty icing on the cake! You looked wonderful and like I said to you then, you epitomize grace under stress and hardship. I've already talked to Whit and we're planning a visit (without kids) to your house. I will come bearing treats and delicious things, of course. I'll be in touch!

Allison said...

It is so good to hear about all of the positive things that are happening with Charlie. Angel, you really are an angel! I'm amazed that you can do so much. It all seems so complicated. Charlie looks great! Thanks for sharing!

Kristin said...

That was an AMAZING post! So much detail and the vision update was awesome news. I love hearing of the progress without having to impose on you with questions. Angel, you continuously amaze me with your strength and organization. I think you are amazing and I'm so glad Coop was placed in your home where he is so well cared for. We love you and are still praying daily.

P.S. We just started my mom on Ativan. Somehow I felt more knowledgeable having already heard about the medication (even though they still had to tell me what it was for). The downside is that it's not really working for her, but that's probably more because the pain meds aren't working. I don't remember if I told you about my blog, but if you have time, you should go look.

Roxey said...

Thanks for the update, Ang! The pics are great too! You are the BEST!
Love and always prayers,

Anonymous said...

Hi I am just going to jump right in here and give you some advice from a veteran at taking care of a Mickey Gtube (i can change one out with my eyes CLOSED!) I have two little boys who were both born with a rare muscle disorder that they share with their dad, and all three of them have Gtubes. I wanted to give you a little trick I learned on keeping the granulation tissue away. If we see any redness around the mickey site, we usually will take a q-tip and put some desitin on it (or any other kindof diaper rash cream) and then put a 2x2 piece of gauze (like the one on him in the picture)and leave it for over night, or for however long you feel is enough. Sorry this comment is such a novel!

Anonymous said...

I just have to day that the desetin trick is worth it's weight in gold. I have a little boy with a g-tube, because he has rare skin disease(eb). We love the Mic-key my son calls it his new belly button.

Charlie Cooper said...

Thanks for the mic-key button trick. I'm sure we will use it. Now, does anyone have a trick for cleaning syringes since we go through quite a few in a day (#39)I've tried putting them in the dishwasher in a baby nipple container but the small ones fall out of the container. Also the dishwasher seems to shrink the syringes making it harder to put the plunger back in. Right now I'm washing them by hand but I like the idea of the dishwasher sterilizing them. Any hints would be appreciated.

Anonymous said...

Angel, that one might be worth a post of its own since it might save you oodles of time or hassle or peace of mind and everyone might not stalk the comments like I do!! Wish I had some good advice. The only thought I had as far as sterilizing would be to boil them, but I have no idea how feasable that is or if it would melt them or whatever. Good luck. You truly are amazing!! God bless you!

Anonymous said...

Hi to Charlie and his family,

We share a mutual friend, but have never met. You and your family have been in my thoughts and prayers for months now. I was so happy to read of the steps Charlie has been taking, your never-ending support of your children, the support you've received from your extended family and friends, and the tremendous turnout at the BIAU event.

Re cleaning syringes, first off, a dishwashser does not sterilize them. The water is not hot enough. Second, since the medication is being sent thru a g or even a g/j tube, you are putting meds into a non-sterile environment. Many bacteria in the intestines are very important in digestion, and we need to keep them happy.

(This is why many ppl develop diarrhea or other complications after taking antibiotics -- the antibiotics killed off both the 'bad' bugs and the good ones. Until the good ones build back up to their normal level ppl tend to have gastric distress.)

While using a sterile syringe for every dose would be great, it isn't a necessity when infusing meds into the stomach.

Unfortunately, soaps and high temperatures tend to degrade the syringes and plungers, making the plunger 'sticky,' or more difficult to slide thru the tube.

My suggestions:
1) Talk w/ the rehab pediatricians and parents in similar situations for new options. This is an 'old' problem, so they may have new tricks.

2) Ask about the possibility of combining multiple meds into one syringe, reducing the number of syringes needed each day.

3) Use Newton's theory of gravity. Hold a syringe full of anything -- formula, meds, whatever -- above Charlie's stomach and the contents will slowlllly move downhill. While using the plunger to push the meds speeds up the process -- and improves the quality of life for everyone involved -- the fluid in the syringe will trickle into Charlie's tummy with or without a plunger.

4) In the interim, I would suggest simply washing the syringes and plungers by hand, as it will reduce the 'wear and tear' on them, instead of putting them thru the dishwasher, because the dishwasher is not adding any additional sterilization or cleaning.

Thank you for continuing Charlie's blog, and sharing the journey your family has undertaken. Although I am sure sharing your life with strangers in this way is not entirely comfortable, all of you have been an inspiration for thousands.

All the best,

Anonymous said...

I just came home from visiting sweet Grandma Cheryl, Britt, Angel and my hero , Charlie! Rob and Angel have a beautiful home filled with so much love everywhere you look. Britt was adorable as he played and showed me his playroom. I have never felt such a sweet spirit as I did when I first saw Charlie! There is special feeling when you see him and I felt like I was in the presence of angels. He is such a handsome little guy. I was lucky enough to hold him in my arms and pat him to sleep. I just looked into his eyes and sensed a valiant spirit inside. I left feeling so blessed to have met him and I cried most of the way home as I was filled with gratitude for all of my blessings. Charlie really does help me remember what is important in life and the whole family continually amazes me at their strength and their love and support for each other. I feel so blessed to have had the opportunity to hold sweet Charlie and feel of his strong spirit. I would love to help in any way possible. I love Grandma Cheryl and I am so glad she allowed me the opportunity to share in her love of this sweet family. We all need to continue with our prayers and pray for blessing of strength and peace for Rob and Angel. Charlie is surely being watched over by angels.

Anonymous said...

This is Hunter's dad. I counted, and I think we are up to 25 syringes a day, not including bolous feeds. To tell you the truth, after 10 months of the g-tube, we rinse them out with hot water for about 5 seconds each and put them on a rack, we dont even use soap. I think the side effects of Hunter's multiple seizure medications outway the chance of contamination. A medication that knocks him out every night, and makes him not able to sweat, can probably take care of itself in a syringe. Since the stomach isn't sterile, no one has told us to be that careful. And as you know, we spend enough time doing medication's all day. Now with a new baby, all we do is wash crap out. However, it definately beats the frantic phone calls I got at work from my wife to come home and fix a NG tube that got thrown up. We have relaxed a lot over time. We used to get up in the middle of the night to go add more pediasure to the pump because it only had a 6 hour shelf life after opening. Now we top off the pump for 10 hrs of pumping, since we will be up at night for seizures, at least we sleep through the annoying beeping of an empty bag. And, when my wife isn't around, because we dont agree on this, I actually mix all his medications in a big syringe like a mixed drink form the best bar tender in town, and do one big push. If they mix a few seconds after going into the belly, why cant you mix them right before? Anyhow, she would be mad if she knew I was saying this. But staying sane and having a life aside from care 24/7 is important.

kik said...

I am so sorry.

You guys seem to be dealing so well. Best wishes for all your hopes and therapies.

linds said...

love the great updates on charlie...thanks angel!

Anonymous said...

sounds like you got some good news during your day of visits! we are looking forward to hearing about charlie's boot camp and to see all the progress he will be making! we love the pictures-especially with big brother britt! i bet they have fun rolling around the house :) give loves to sweet charlie from his biggest fans in orem.

EMILY said...

After reading the comment Bryson left, I feel the need to defend my parenting skills a bit. First, every couple of days I do wash out the syringes with hot water and soap! Not every day granted, but it does happen. Second, we usually hook Hunter up to his pump around 10:30. Bryson turns the pump off at 6:30 when he leaves for work. The Pediasure cans don't specify how long the liquid can sit in the pump bag and still be good. I think someone (a home health nurse?) told us six hours, but I've concluded after several trial months, no ill effects occur from it being out 8 hours instead. Finally, I have forbidden Bryson from mixing the meds and giving them like he described. I doubt he's really been brave enough to defy me on that, but I don't know for sure. Anyway, I'm glad Charlie has a button now instead of the big tube. I love Hunter's g-button. Best of luck with therapy! Don't get discouraged. Sometimes Bry and I are the only ones who notice progress with Hunter.

Anonymous said...

I wonder if you get the baby bottle microwaveable sterilizer. I found some on by Born Free and Munchkin. I hope this helps and maybe can work.

Anonymous said...

Dear Charlie,
I just wanted to say that you are in my thoughts and prayers sweetie! God bless.