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, April 4, 2012

Sad but True

Yes, we are here again! We've been home exactly one week and are already back. I hate it!! Makes me mad, sad, frustrated, aggrevated, and tired! On Monday evening, I had bathed Lydon (its kinda funny to see an almost three year old in the kitchen sink but it works better to keep the dressing dry on his PICC line), dressed him, given his meds and hooked up a Ferrall bag which helps drain his tummy and keep him from being so distended and uncomfortable. We were all in the boys room at the time... I was dressing Ly and cleaning his GJ site, Jono was getting Aidan ready for bed and Hollie was standing there observing us all. I stood him up to pull up his pants and out came the tube with the balloon intact! We all revolted with a loud "Ooooh NO"!!! Poor babies....Lydon and Aidan both started crying, and then the sadest part...My sweet Lydon started apologizing with his tiny little voice and pouty lips, "I saw-wee Mommy". Of course, I grabbed him and hugged him and told him it was ok and wasnt his fault. Sissy took over while I went and grabbed a G-button from our travel bag and put back in so we could hold the stoma open over night. This was probably the one moment in time where I was thankful for our TPN because it saved us having to run to the ER. With Lydon's current GI and metabolic issues, we would've had to immediately go in because he cant handle enough milk in his stomach to nourish and adequately hydrate him. So, all was well after that. Everyone slept and we went in to our GI appointment the next morning. I met with the GI docs in clinic and literally begged them to let us increase our TPN rate and stay home until we could get on the IR schedule to change out the tube. I did not win. ;( They felt it was best for Lydon to be inpatient and try to get the tube fixed that way. They gave me admission orders and after I took our nurse home, we headed back up here. I was so sad to be coming back but thankful that at least we didnt have to go through the ER. As of this moment, I have not heard from GI. The pedi team tells me that they are working with IR to try and see if they can get a non balloon GJ tube and will insert that tomorrow morning as opposed to the same type of GJ which is held in place by an inflatable balloon. Please pray that this will work out...that we can get this new tube without general anesthesia and be heading back home tomorrow afternoon. We are pleading with the team to get this done and get us out of here before Friday. This is not where we want to spend Easter weekend. Thanks for the prayers, love and concern.

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