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...

Sunday, February 24, 2013

Fear, Hope, & Faith

Just taking a moment to share... This is not really an update on Lydon but more of just a window into my life right now as Lydon's mommy.  First I should say how very blessed I am to be  Lydon's mom.  He has a way of melting my heart and making it swell up all at the same time.  He's an amazing little boy and I am so very thankful and grateful to have been blessed with him and see him overcome the challenges that he has. He is so strong... so brave... our "Super Man"... and often times our hero.  That being said, I am so very nervous about the procedure we are scheduled for in a couple of weeks.  While I feel like being accepted into this new clinic is a good thing and could provide answers and the kind of care we have prayed for I am having a hard time calming my nerves. Those that are closest to me have tried telling me "not to worry" and to "have faith and leave it in God's hands." While spiritually (mentally and emotionally) I know that this is the right thing to do, its what I need to do and in fact, it's all that I really can do, I just cant seem to do it.  For me, the thought of putting Lydon under anesthesia again is not just terrifying scary, it's physical.  My stomach hurts at the thought of watching his little chest suck in and out as he struggles to breathe and seeing his tummy bloat as he breathes harder and becomes more acidotic. My head hurts as I think about the tears I've cried and the conversations we've had discussing our options with numerous physicians during these times.  My neck hurts and I have literal knots in my back and shoulders as I remember the nights without sleep or slightly sleeping in a cushioned window sill (literally). My heart aches at the thought of the pain and suffering Lydon could go through and for being away from my other two babies night after night and still not knowing if or when Lydon will turn the corner and get better again. Despite it all, I know that this is the right thing to do for our boy. So, somehow as I've done many times before, I have to find the strength and courage from within to soothe my stomach ache, relax my neck and back, and squelch my fears. And while as a Mom, my inner most self wants to crumble and give in to the hot mess of emotion I am feeling, I can not...I will not.  My boy needs me to find my hard shell and wear it! He pushes so hard every day against challenges that would get the best of many adults in a matter of days. "No, my doll I will not tuck my head under my shell and hide." I will stand behind it and fight for you just like I always have. I choose 'Hope'.... I choose to believe that even more prayers will be answered and that this will be your time, your season... that we will find answers through this procedure and come up with a plan with this new team that will allow you to play and not be oxygen hungry, eat and not vomit and sleep and be rested.  This is my wish, my prayer for you Lydon, my 'Joy'.  So as hard as it may be to ignore the physical aspects of the anxiety that I feel, I will hold on to my 'Faith' in our Heavenly Father which is so much bigger than my stomach ache, my headache or even my fear. No, it is not an easy thing to do and I have to keep reminding myself (over and over again) that HE is with me and HE will be with you on that OR table. Slow and steady wins the race!

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