Luke is sleeping peacefully right now. It was a late night last night. His NG tube was acting up and consequently we are now on our 4th tube...puppy, fish, monkey and currently tiger. This was not a great first try at becoming nurse mom. I needed to go for training to learn how to use the tube because...We are getting DISCHARGED!! They estimate 4-6 weeks outpatient here in Philadelphia and so far Luke's body is doing a great job behaving. We also found out that the broviac is going to be removed. This to us is like getting an A++! NG tube training I can handle but the broviac training I had to have last time sent me into a spiral. I remember trying to refuse to do it...that was not an option. Currently on deck today, my hero will wake up a little lighter and much less difficult to untangle. Tomorrow morning we will leave the little room that oddly feels like home right now. Luke will feel the sun warm his skin and breathe the beautiful spring air. It feels awfully like an Easter miracle.

We are overjoyed! Luke couldn't be happier to get rid of his tubes and, more so, learn that he no longer needs his "poke" twice a day. I can't wait to sleep in a bed that does not need to be blown up each night and my mom can't wait to sit at a table to eat more beeping!! We get to leave these little inconveniences behind and, more importantly, the big obstacles that we have conquered. We now begin to prepare for the next phase. With every step of this journey we have new hurdles to tackle. Luke will continue to be in isolation for 90 days. We need to remain here in Philadelphia at a hotel until June. He cannot go to restaurants or stores or parks. He needs to wear a mask as well as any visitors. He will not be able to go to the beach for a year. A whole summer with no beach is hard to imagine...but we will not be in the hospital! We will need to come to the clinic in Philadelphia once a week for 3 months until we transition to every other week and then once a month. 

Tomorrow we leave behind a family. First, the doctors with an abundance of knowledge to save my Luke. Second, the nurses with dedication to be by our side every step of the way. The nurses put in long hours giving medicine (most often unwillingly), changing dressings, translating between doctors and families, supporting emotionally and getting all of the many things we need each minute...just to name a tiny few. There are also the pure hearts that dedicate their time to bringing smiles to children that are miles away from happiness. Their goal is to make the world better...just by caring. When you are inside a place that you would never want to be and surrounded by people who give their lives to help, you truly see what is the special world we live in. We have a long road ahead, but we are in route. Next stop...Hotel Windsor...

Big attempts to get Luke to drink water:
Finally...Parmesan cheese! Luke waited desperately to be allowed his Parmesan cheese:


Submitted by paula sperber on April 13, 2017 - 7:30pm

These updates are incredible. Sending prayers!