We woke up in Manhattan in my bed! Jude, Zane & the SnORing dog, LUCAS, had the best night of sleep at home in my bed!!! Thursday, PM after Damon dad’s funeral we will head back to KC for early morning labs & transplant clinic bright and early Friday(hope for boring labs). If life is good trips to KC twice a week for labs & transplant clinic will be our normal for the next year(rough draft plan/pre Transplant nurse coordinator). The nurses that work at Children’s Mercy Sutherland floor, mostly trauma or transplant kids, say it is wise to always have a plan on lab/transplant clinic appointments. It is smart to have a suitcase in your car just incase the labs are subpar & or disappointing and hospital admission is necessary… I have a worry monster that has always been a part of me, I am trying to not live in fear. Jude has really helped me with the art of ENJOY the MOMENTS & be grateful for “MOMENTS”.

 

The stressor/worry right now for Jude is weight gain/nutrition/appetite. I am super Bummed that Jude’s NG tube has needed to replaced 3 times since Friday, due to vomiting… Jude currently despises & resents the NG tube & it really makes him frustrated when the time comes to replacing it. He asks how much longer do I need it & there are now answers… NG is Medically best pre/post transplant team. The child life specialist & I have been working on a coping plan for replacing NG. I am confident in time Jude will accept that 4 ensures a day will be like another medication & he will accept he needs to help him thrive. If the NG tube plan doesn’t work for growth/weight gain/nutrition I will need to be trained on TPN. There are heart breaking moments for me, that I TRY to push through because we asking SO much of Jude. He says things that break my heart like, “it’s enough! Quit hurting me! It my body, my choice! When will we be done?  I want to go home!”

 

I am told I am strong, at times I HEAR Jude & it tugs at something inside of me that I can’t find words to explain…