I am not quite sure what happened over the last few days since discharge. The day itself was a dream come true. We waited anxiously for that day to arrive. The irony is when the moment happened there were so many emotions in line. Extreme excitement and happiness certainly being the front runners...with a bit of fear and sadness thrown into the mix. The nurses had started to feel like family, 3 East felt like our home and the fear of being totally responsible for Luke's safety and health was surfacing.
Our exit felt like a scene in a movie. Luke leading the way with us smiling and trailing behind. The team waved good-bye and clapped. You could feel how proud of him they were. We were off! Luke could not control his excitement. Grace and Luke ran around chasing each other laughing and giggling. It was perfect happiness.
A pin ball machine! That is what comes to mind. When we arrived at the hotel our first task...unpack evvveryyything! Where did all of this stuff come from!?! ...and do it with two rather enthusiastic little people "helping." The second challenge...trying to use the ph strips to test that the NG tube is in the correct spot. This worked very easily when I practiced at the hospital, yet somehow...nothing!...I got nothing to come out. Several calls to the oncall doctor and several suggestions put into action and still nothing. Finally, situation number 3...only one of the two boxes of equipment/food were delivered. So again...several calls to the Home Care and we would receive what we needed at one am. Needless to say, this was a rather stressful start but morning came and magically everything fell back into place. The tube was working...and we escaped a trip to the emergency room to have an x ray/replace the tube. The rest of the weekend was spent trying to manage the six medications...which two needed to be separated...which one can't be given before or after food...and which ones needed to be taken with lots of water...my head was spinning! I needed to monitor what Luke was and wasn't eating and replace it with a feed when necessary. The nurses make it appear so easy!
Among the chaos...everything stood still. It was a special day to celebrate. God has never left our side. I thought back to what I overheard Luke saying the last night in the hospital, "Good night Grandpa." I felt that he knew...Luke knew my Dad had been with him every minute. It was Easter Sunday. My family was together. Jesus had risen and my warrior is in the lead.
Monday came and I had just about gotten a handle on my role. As I stood confidently checking off the completed medicines...I asked Luke if he wanted to remove the circle patch (transderm scop...to prevent nausea). I turned around and Luke was holding the NG tube in his hand looking both confused and relieved. I guess we hear what we want to hear! At this point Luke's eating seemed to be in control. We were still monitoring his fluid intake...but the medicines!! How am I going to get him to take all of those medicines orally!?! So far, as long as I allot several hours and have stock in toys of any shape or size, practice, patience and beg when necessary...it gets done. Poor little guy is giving it his best shot. He doesn't want that tube back.
It is now Tuesday and everything feels back to some sort of control. We have checked off watching "Trolls" and "Sing." We do this at least once a day. I am so thankful for these movies because they make Luke happy. Through all of this it kills me to see the emptiness mixed with frustration that Luke struggles with. His five year old brain does not understand you can leave the hospital but you can't see your friends, you can't go anywhere and you have to wear a mask. Why? I know why, but it doesn't make it any easier for him. We have all traveled so far but in the end this will always be his victory.