I updated Conners website about the information we got from the doctor about the diaphragm pacers: Hello everyone! I hope you are having a wonderful week and getting ready for the holidays! We have been doing a thankful tree at our house, where everyday we write something we are thankful for on a leave and place it on the tree. It has been a lot of fun to do this as a family. I love seeing what everyone is thankful for! Now on to our appointment with the doctor in Cleveland about the diaphragm pacers. We had a great visit with the doctor and his nurse. They spent almost 2 hours with us going over everything and answering all of our questions. The doctor actually wants to do this procedure sooner than later. He said really it should have been done 7 years ago. He said that with Conner hyperventilating the way he has been, by breathing to fast at times, it can actually cause damage to his lungs, that cant be fixed. We have set a date to do this procedure for December 16th. He told us that it definetly needs to be done, and if this doesnt work, we really dont have anymore options. I need you guys to pray hard about a few things, and please put it on your church prayer list also. 1. We need to pray that Conners diaphragm is working correctly and that his lungs havent been damaged! I honestly believe that everything is fine and working correctly though, because he has a very healthy set of lungs. The doctor always has to tell you the worst case scenario though. But it doesnt hurt for us all to gather in prayer about it!! 2. He also told us that there could be damage around his trach, from having his trach for so long. If there is, that would mean that when you turn the pacers on and turn the vent off, his airway would collapse. So that in turn would mean that pacers wouldnt be an option. Like I said before, I dont believe that is the case either, but we need to pray against it!!! There are no test that can be done before hand to check this issues either. It is one of those things they wont know until they get in there. 3. Please be praying about the weather!! They have harder winters there, than we do. It was very cold already the whole time we were there. Conner doesnt regulate his body temp. well at all, and gets cold very quickly. His body actually starts going into hypothermia! We have seen him get so cold that his heart rate goes into the 30s and we are struggling to get him warm again. Pray that no snow storms blow in that will be bad. 4. Pray for Conner to stay well and healthy the next few weeks! He did have to tell us the worst case scenario, but he also was very positive about a lot of things. He did tell us to remember that this will be like training for a marathon. He said most people train a year before running a marathon, and we have to be patient and remember that! He said he usually has us start out at 5 minutes every hour during the day, then we work up from there. He said every child is different though and he will establish that plan of where to start before we leave. Conner may be able to go longer or he may have to start slower than that. The way the pacers work, we will actually turn the vent off and then turn the pacers on. The pacers make his diaphragm contract and make him take a breath. It will make him breathe exactly like how we breathe! We will slowly work up to getting him off the vent all day long. Then we will start working on the night time part after he is off all day! The night time, will be the hardest, only because we will basically have to stay up most of the night turning the pacers on and off. We are willing to do whatever we have to do to get him off the vent though! I know God will take care of all of that and give us the strength we need to do it! When we left there on Monday, I started praying that if this was not in Gods will that he would start shutting the doors and not allow it to happen! All of the doors continue to fly right open for it. So I believe God is wanting this done and wanting it done now! I actually left the doctors office in tears though, because he had told us that if this didnt work, there were no other options for Conner. He told us that his life expectancy of someone on a vent is around 30 years. That broke my heart and scared me to death. All I could do was pray that wasnt in Gods plan for Conner, because after all I have lost and been through the last 7 years, I cant even begin to imagine losing him again. Technically I did lose Conner that day 7 years ago, and I dont want to ever go through that again!! I cant even begin to imagine my life without Conner! The fear and panic that comes over me when I think about it, is enough to mentally break me! It is amazing to me though how God keeps reassuring me that Conners body is functioning just fine. He reminded me of his bladder and how they did the uroedynamic study to see how his bladder was functioning and it came back perfect. I remember the urologist in Dallas saying how he has no clue how it is working perfect, but it is. So I believe if Conners bladder is functioning perfect, so is his diaphragm and everything else. It is just crazy how the devil can creep in so easily and put fear and doubt in our minds. It is so hard to stay focussed on Gods voice sometimes and not start sinking in the water! So I am focusing on pushing that fear and doubt out of my mind and focus on the amazing blessing it would be to have Conner off of the vent! I think about all the freedom that will give him. I think about how amazing it would be to be able to load him up in the car and go somewhere by myself with him! I think about how much easier it will be just to go somewhere with him. People dont understand right now, that it is literally like moving to go somewhere with Conner! There is so much stuff that has to go with us! It isnt an easy task, but we do it, because we dont want Conner bound to the house! He needs to be able to get out and go do things! It gets very depressing being in the house 24 hours a day! I dont understand why God chose us for this journey in our life, but I know he has used our lives to already touch so many! I believe there are so many more miracles that lie ahead for Conners life! I am excited about this journey and cant wait to watch his life unfold over the years. I recently seen where they are making a movie on the book Heaven is for Real. You need to read that book if you havent yet, but this little boy had a near death experience and he has some amazing stories. All I can think about is one day Conner is going to start talking and I know he is going to have some amazing stories to tell also. I cant wait until that day comes!! You can ask him right now if he sees angels and he will give you the most amazing smile and look over like he is showing you right where they are! I will always ask him if he is showing me where they are at and he smiles big again and looks back to the same spot! It is something so amazing that I cant even describe that experience we experience with him! So I know he has lots of stories to tell us! Thank you for being such faithful prayer warriors for us and allowing me to be open and honest with all of you! I will update you when I have more info about the procedure and the days we will be traveling back and forth! I also wanted to let you know that my dad is finally starting to feel a little better! He still isnt back to 100% yet, but he is definitely starting to feel better than he has since the surgery! Thank you for your prayers for him! I know we all greatly appreciate it! We hope everyone has a wonderful Thanksgiving and we love you all so much! Robbin, Sonya, and Conner
Posted on: Thu, 21 Nov 2013 21:38:33 +0000
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