Well, the surgery went well and fairly quick. The GI was done much faster than expected and said everything looked completely normal. The surgeon them placed his G-tube which took about an hour. After 2, what seemed to be very long, hours Kev and I went to see Cam in recovery. He was very groggy still but insisted that he wanted to see the tube that was in his nose so we took a picture of it and he went back to resting. ( thank god for camera phones!).
We got settled into our room, met our nurses and got the plan for the day. Cam was so great all day, he was really a trooper! He spent all day laying low and never complained or said too much of anything. The ng-tube (the one in his nose) was set to drain all of his fluids below gravity for the first six hours, then they would “rack it”, or put the tube in the air to see if his body can digest his own fluids. Then after 12 long hours of a tube up his nose it could be removed. So that’s the plan………..here’s how the night really went
Things were going well so at 5:30pm they racked his ng and we waited. We watched movies and tv, cam still wasn’t up for talking too much so we all just relaxed. Thanks to Morgan, jayme and ilynn we didn’t have to eat hospital food 🙂 so we had a good dinner and began our night. Cam has been on a schedule of pain medication every 6 hours, so he was pretty comfortable. As usual doctor after doctor comes in, checks him out tells us he needs to use the bathroom because his bladder is full. Well, we had no luck so in comes the nurse at 9pm with a straight cath………..NOT FUN! We got through it and finally got cam settled back in about 10:30 and by 11 he was sleeping soundly. At 11:30 the door opens and its time to remove the ng and begin putting clear liquids through his G-tube. All was good until Cam fully wakes up to someone messing with his stomach trying to connect the extension to his new button (g-tube opening). Everytime she touched it he was in pain and so were we. Finally it gets locked in and she removes the ng, although unpleasant feeling Cam said it was worth it to get that out of his nose. Now for another dose of toradol and back to bed. We slept as good as expected in a hospital with things beeping, people in and out and the deluxe recliner and sofa sleeper in the room.
Then comes 6am…….nurse check. The first thing she say is “we need to get him to pee, it’s been over 8 hours”. Here we go, Cam is upset and moving into full meltdown ( can’t say I really blame him). We try everything and in the process his tube gets moved around and now he really can’t go because he is in too much pain. Back to bed we go……..with no success. :(. Now we are waiting for the day shift to come in and decide what the plan will be from here. Initially they said we would be going home today, but not sure that’s going to happen at this point.
We are just taking things a little at a time and crossing every bridge together as a family as we get to it. We keep telling Cam to keep his spirits up and it will all be over soon and he will feel better every day!
Thanks to all of our family and friends for your love, thoughts, prayers and support. We appreciate everyone that takes a moment out of their day to think of us, it means more than we could ever express in words!
So we have been waiting to let Cam know that we scheduled his surgery until the day got closer so he didn’t have too much anxiety or worry about it………little did we know, we were the only ones with the anxiety!!!
As Kevin and Cam were sitting in the living room watching TV Cam says “I have a question, Why am I having surgery?” So Kev asks where that question came from out of the blue. Cam says “I was looking at the calendar on my Ipad to see when we were going to Monster Jam and saw that it said Cam surgery on Monday the 11th.” Kev began to tell him that it was for the feeding tube and Cam responded by saying “is it the thing in my nose?!” of which Kev responded no, it’s the one in your stomach and Cam says “OK, good.” Then proceeded to watch his TV show!!!!!!
The entire situation was very surreal, clearly he has known about it and dealt with it MUCH better than we have!
I came home from work tonight and asked him about it as I was kissing him goodnight and he told me it was no big deal. Just 2 weeks ago he freaked out at the idea of a tube and now he seems to be just fine with it???
Don’t get me wrong, it’s a good thing! I am glad that he has thought about it and accepted it, I wish I was half as brave as he is. He sees everything from such a different perspective and it just never ceases to amaze me!
Love to all!!
As some of you know, we have been battling Cameron’s inability to gain weight and his eating habits for the past 10 months. We have tried everything imaginable to get him to eat well and maintain and/or gain weight and nothing seems to be working. We had been seeing a dietician through Shriner’s hospital who offered us many great suggestions and tried her best to help us fix the problem, but we had no success. We were left with keep trying and we need to put in a G-tube (http://kidshealth.org/parent/system/surgery/g_tube.html) for feeding if he doesn’t eat. (Cam did not take well to the “scare tactic” instead he decided he really did not like the dietician) Back in November, things took a turn for the worse as Cam developed a persistent cough after eating and started to vomit after meals quite frequently. We then turned to his pediatrician in hopes of finding a new path that may lead to some sort of relief. She referred us to a Gastro and immediately ordered a barium swallow in fear that mechanically something was not working properly in his digestive system. The Gastro said the study was negative and everything seemed to be functioning properly. He then told us of a feeding disorder clinic for children that he was part of and felt that this would be a great fit for Cam as we all feel the majority of our problem is behavioral. Finally, some sort of light at the end of the tunnel………….maybe someone here could help us!!! With hopes high, on Jan 16th we traveled to Central Dupage Hospital to meet with all of the clinic Drs in one setting (Gastro, speech, nutritionist and psychologist). They start by coming in together, asking questions and taking medical history. Then they all leave the room to discuss a plan that they think can help us fix the problem based on all of their observations. Still feeling hopeful, and a bit overwhelmed and confused at all of the days events, they reenter the room. The result…. not quite what we had hoped for. Cam will be going in for an endoscopy to rule out any other GI issues that may be causing him to not want to eat. At the same time they will be putting his G-tube in :(. As much as we didn’t want this for him we know that it is the right thing to do for his health. He will be having surgery on Feb 11th at Lurie Childrens hospital in Chicago, we will spend 3 days there learning how to use and take care of the feeding tube then we get to come home and hope for the best. Right now we are still digesting all of the information and the fact that Cam will be going in for his 3rd surgery very shortly. The Drs are all in agreement that the tube is temporary and we will still work to fix the underlying problem and eventually be able to remove the tube. We have not told him yet that it is scheduled, and still are not sure when and how we plan to do so. He will not be a happy camper, he gets extremely upset anytime someone mentions the tube.
I will keep everyone updated over the next weeks if anything changes and will post after surgery to let everyone know how it went.
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I decided that starting a blog was the best way to keep everyone up to speed on the happenings of Cam and our lives, whether it be good, bad or ugly. Cam has been having some struggles as of late and it seems to be harder and harder to be sure that everyone that wants updates gets them in a timely fashion, so here it is!
I invite you into our family and hope that as I post news, info and facts about Cam and Muscular Dystrophy that we can raise awareness of this terrible disease as well as keep everyone informed of what he is up to as he gets older. Please feel free to add in comments and information that pertains to what we are going through at any time.
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Raising a child with muscular dystrophy creates a life filled with deep valleys and high peaks, and you never know what’s over the next hill. One day you are having the time of your life and feel like you won the lottery and the very next day this disease can take that away and you are left asking yourself “why Cam?, why us?”. No doctor can tell us what lies ahead, good or bad, and no medicine can take it away or even make it better. All of your love, support, thoughts and prayers are what help us climb out of the valleys and enjoy the peaks to the fullest.
We feel very blessed to have Cameron in our lives each and every day. No matter what this disease does to him he always wakes up with a smile, ready for whatever the day brings. He has made Kevin and I better people by showing us what living is really about. We don’t sweat the small stuff, we never let anything come between us and our family, and we appreciate everyone in our lives like never before.
I will post a link to MDA for those of you who want to learn more about the disease or want to know how to get involved in your area with MDA. They are a part of our family and have been there for us through everything in more ways than one.
Elisha, Kevin and Cam