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, December 1, 2010

Confessions and Surgery

   They say confession is good for the soul and I'm going to do my best as I blog to always be honest about what I think, what I feel and what is going on.  I think that this is what will be the most therapeutic for me and the most informative for all of you who are reading this. goes. 
   Last night, I thought I might literally pull my hair out.  Both of the boys were whiny and clingy, they were making messes, hurting each other and I just wanted to get away.  So, I did. I purposely told Jono not to get diapers when he stopped at the store on the way home so that there would be something that I needed to go out for.  I met a friend...we got coffee and stayed out way too late.  I did remember to get the diapers before I came home. ;) 
    I felt better but there was still a part of me that wished that I didn't have to come back home and face the responsibility that greeted me this morning when I woke up.  So, I got up and dressed Aidan and took him to school and came home and got back in bed.  I haven't changed my clothes today from what I wore yesterday and I don't plan on cooking tonight because tomorrow I wont have these options.
    Tomorrow I will be back in the hospital with Lydon.  My awesome incredible hairdresser came by my house last night out of the kindness of her heart and trimmed Lydon's hair for me.  I told her I may come in to the shop and put some brown streaky highlights in my hair.  Its not really that I'm not happy with my hair.  Ive always loved my blonde hair and have never really ever wanted it to be any different.  I think that I just wish that things were different.  But they aren't.  So for now, I will keep putting one foot in front of the other and walk down this unknown path that life and most definitely God is leading us down. 
      Tomorrow, Lydon will have the feeding tube that goes in his stomach ( called a G tube) switched out with one that goes directly into his intestine (called a J tube).  When we decided to go ahead with inserting his G tube, it bothered me but I knew that we had no choice.  I along with several different docs had tried everything to treat his reflux and get Lydon to eat.  He was not gaining weight or growing and even his bloodwork showed signs of malnutrition.  All of those things hurt my heart and Ive felt so bad that he has a plastic tube sticking in/out of his little tummy.  Nevertheless, this surgery bothers me even more.  I guess, there was a part of me that felt like when we did his fundo that all of this would be very temporary.  I thought that maybe we could fix his reflux with the Fundo, get him nourished and back up to par with his G button and the proverbial white picket fence would reappear.  Instead, his gastric emptying time has gotten worse and not better like the doctors had hoped.  The GI specialist (Dr. Navarro) told me that its as if Lydon walks around feeling like he ate Thanksgiving dinner all the time when in reality he has only had 1oz. per hour of a predigested formula. He therefore has almost completely stopped eating orally except for his bottle three times a day and an occasional bite or two.  He has gotten to where he doesn't even want to see any food on his highchair tray.  He hasn't gained what they had hoped or expected him to since his button was placed. He has started vomiting almost as much as he did before his Fundo.  Dr. Navarro says that is a direct result of his stomach not emptying.  Ive known that lots of babies temporarily end up with a G tube for some reason or another but a J tube just seems more invasive, more permanent and more of a reminder that Lydon's little body isn't working right. 
      As of right now, Lydon is scheduled for the first surgery case of the day at 8:30 am.  Lydon almost always has problems with anesthesia that have landed us in ICU twice after an intubation.  So, especially with him still not completely back to normal from his recent RSV infection I don't expect this time to be any easier. Please keep him, us and the physicians in your prayers tomorrow. I will do my best to post updates here or through facebook.

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