First off, Happy Holidays from Michigan! It's freezing here!
My hubby Rick, 30, was born with LM and has battled it his whole life. He has recently, in the last year, developed a mass on his airway. I freaked out! His airway??? This can't be happening. He is my life, my best friend, my husband, baby daddy, etc. Time to take action.
I finally stepped in and took this 'project' under my wing. My hubby was just mad about not getting any answers, so if me taking charge alleviates him having to think about it even 1 hour a day, I will do that, I told myself. Afterall, he does so much for everybody else.
After much trial and error with clueless doctor's here at U fo M, we went to NY on Sept. 11, 2007 to consult with Dr. Levitin and Dr. Waner. What a freaking relief to finally be in a place where you belong! I must say all the scrapbooks on the waiting room table were so inspiring to look at. At the same time, I had to stop myself from looking at them because I didn't want to be a crying mess when we saw the docs. Which by the way...they were exactly who we needed to take on Rick's case. Thank goodness for them!
Dr. Levitin did the scope to check out his airway and things looked ok. He was so shocked that Rick hasn't had to have a trach yet in his life. When you look at his MRI scans and the documentation behind his story, it is pretty amazing but so is he.
We are going back to NY the week of Jan. 28-Feb 2, 2008 for surgery with Dr. Waner/Levitin. That Monday he will get the trach put in place and Thursday will be the laser debulking. We should get to go home that Saturday. We are scared about the trach because he will be awake during the placement but it needs to be in place before any swelling happens from the laser treatment. He will have the trach for 4-6 months and have to go back for additional surgeries, we are told.
Rick will be off work for 6 months and feels horrible about it. We are a two income family and I told him, everything will work itself out. I am sure it is not easy, especially being a man, and feeling like your life will be on hold for 6 months. But we have an amazing daughter, 22 month old Belle. Not to mention, a huge work, family and friends support system. Everything happens for a reason
If anyone can offer any guidance on what to expect with the trach or anything else...we would really appreciate it.
I know Rick would love to speak with any other adults living with this condition, so please feel free to email him: firstname.lastname@example.org
Thanks for your support!
Kristi, Rick & Belle Sixbery
P.S. Family photo attached...aren't we cute? Haha!