Im typing with one hand as my other hand is holding a hot cloth on my ear. The link below will inspire you. It shows what can be done with the right attitude. For us, our family, our Jordan this device was a miracle! Jordan was listed for a second transplant on August 3, 2010. It was my 40th birthday. (Remember this, my birthdays are interesting with Jordan!) Jordan Ulrich went into respitory failure as we were rushing to get her to Cedars-Sinai. Her Co2 levels were 150! (Under 40 is normal). They put her on a vent and brought her up to ICU. I think few expected her to last through the night. (One did! Our favorite nurse!) She survived that night and the next and the next. Ill skip over to when the decision was made to trache her. Ashton, who never was terribly involved in decisions, was completely against it. She knew Jordan would HATE it and she was right. She wanted another solution but there wasnt one. Jordan woke up and couldnt talk because the trach doesnt allow you to drink, eat or talk. We tried computers for her to communicate, paper, sign language. None worked and she was really, really frustrated. I figured it out! John and I left to go to Target to buy a whiteboard and dry erase markers. There is only one Target in that area and there is zero cell reception because its partly underground. The whiteboard was bought and we returned to the hospital. Entering ICU was interesting, we were grabbed and pulled along to Jordans room. In 23 years Ive learned to read doctors and nurses pretty well. They were in a panic but it wasnt a bad panic. Poor Dr C! I dont think anyone has ever seen him so flustered. Smart doctor too! He didnt tell Jordan his big news, he waited until we got there. (A quick check of my phone showed I had missed 63 calls!) I wish I had video this unique moment in time. He woke Jordan up and told her he had some news, Jordan had a donor and she was going to get her new lungs. Ill never forget this as long as I live. Jordan pushed herself up on one arm, weak from the weeks on the vent, and grabbed his hand. She started crying, extremely weird when you see someone crying with no noise! Tears poured down her cheek as she mouthed Thank you! over and over to Dr C. Ive often wondered if that was the time she became more than just a regular patient. (Although they try not too, Ive noticed doctors and nurses get attached to their CF patients.) From that point on there was a definite bond between Jordan and Dr C. . Jordan had her transplant and within days announced she was hungry. On a trache, you can not eat or drink. Jordan was determined. NEVER stand between a CFer and food! Its like standing between a Mama bear and her cubs! Lol! Jordan pushed ahead and before long a miraculous device was introduced to her that enabled her to talk, eat and drink. Until a few minutes ago, I didnt know the story behind it. Jordan loved it. Now she could thank Dr C. publicly and she did so. The miracle devise that allowed her to talk and drink and eat is called a Passy-Muir device and the person who invented it was on a permanent trach. Can you imagine? Most are just struggling to breathe but David A. Muir wanted to change things for the better. Can you imagine not ever being able to talk again? Or Kimber Shan saying last night how beautiful it was to hear Eryne CF Shans voice? Imagine not being able to eat for the rest of your life? Thankfully, Jordan was able to get her trache out and life returned to normal. David Muir, in the video link below, has helped thousands of people. He did something we forget to do. He took something bad and made something good come of it. This video is defiantly worth a watch! passy-muir/pmvideos
Posted on: Thu, 13 Nov 2014 22:33:27 +0000
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