This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Wednesday, February 13, 2013

The latest on Ly


   Last time I updated on Lydon, we were trying a new medication and had just changed Lydons GJ tube out to see if that would help any with his pain.  It has seemed to help with his pain-YAY for that-- but his appetite has not been what it was and he has definitely still had a lot of fatigue and poor stamina.  In December, we made an appointment to meet with our ENT.  This doctor has taken care of us before when Lydon was younger and in fact was the first doctor who suggested that Lydon may need some type of airway manipulation such as a tracheostomy or surgical intervention.  That of course is the last thing in the world that we want but as parents we also want for Lydon to have a quality of life like the rest of us. At the moment, his quality of life isnt the greatest or not at least where we would like it to be.  He can not play for more than a minute or two (no exxageration) without becoming very short of breath and vomiting.  He stays very very pale and has little to no energy. Literally to the point that he doesn't feel like eating.  On Saturday, he was with my mom all day and usually "eats the house down" just because its Granmommys house I guess, but he ate nothing until about 7 pm and then ate a small bowl of oatmeal but by 9pm he vomited twice as much as he ate. Yesterday, was much the same except the oatmeal was mac n cheese. He's such a "pro" at vomiting he knows to run to the kitchen or entry way so that he vomits on the tile. So, back to our appointment...We made this ENT appointment back in December after we had met with the Cardiologist and gotten the all clear from them on Lydons heart. Once we ruled out his heart as our culprit, we felt like re-evaluating his airway was our next step.  Since then, Lydon has continued to have the issues and symptoms I already described and occasionally de-sats when he sleeps.    So, we were very anxious about this appointment again in hopes that we might find some answers and some way to change some things for Ly.  The appointment was originally scheduled for last week but I got a call that the doctor had a family emergency and had to cancel.  I was very upset and explained to them how long we had already waited and what we were coming in for and they rescheduled the appointment for yesterday.  I'll admit I was somewhat anxious but after literally years of searching for answers for Lydons issues, I've learned not be too optimistic about hearing anything conclusive. So yesterday we go and give some history to the doctor. She talks to us for all of about five minutes and then says that there is a clinic that Lydon belongs in and she'll be right back.  So, she leaves the room and comes back with the coordinator for a fairly new clinic at TCH for medically complex kids.  She told us that it "just so happens" that this new clinic was there having their clinic at the very same time in the very same hallway as we were.  I do not count it coincidence....again our appointment was originally scheduled LAST week.  What are the chances of our appointment being rescheduled to this particular day??? So, we didn't get any answers to anything yesterday but we were referred and accepted into this new clinic.  We will be seen at the next clinic day the first part of March and the three doctors that head up this clinic together will go back to the OR the next day. To say I am anxious about this is an understatement.  I am optimistic that this may be our answer to some extent. I am nervous and worried and scared and a host of other adjectives that I dont have time to write about in regards to Lydon being put under anesthesia again.  They have already reassured me that every precaution will be taken but I know Lydon and not the 10,000 other kids they take care of therefore, I am only slightly reassured but not relieved. So we will see... We did feel "handed off' but we did not feel dismissed but rather "heard" and in our world, thats a rare and beautiful thing.

"There is a season for everything, and a time for every event under heaven" Ecclesiastes 3:1-International Standard Version


  1. Jana... You are so full of strength and courage. I know this road isn't easy... it will probably be the single hardest road you travel, in fact. But Ly is such a precious little boy and oh so very lucky to have you as his mommy. I've only met him once in person and I have no doubt he is one of the most loved little boys on the planet. Thank you for being so open with your struggles. Thank you for allowing us to see a glimpse of your heartaches so that we can lift you, Ly, and the rest of the family up in our prayers. Thank you for sharing the joyous moments that have even the slightest glimmer of hope. We know the dealer in hope and I know he holds your family so close.
    Much love and many prayers, my sweet friend.

  2. WOW Brittany! Thank you.... I am humbled by your compliments and kind words. Thank you for the encouragement and most of all the prayers for without them I/ we would not make it!