Hopkins Remix – Day 4

Walk Outside Hopkins January 2017
Walk Outside Hopkins
January 2017
Good evening friends! Today’s health report for Danny is pretty straightforward – we have 1/4 of the blockage that still remains. This portion is located in the smaller intestine and will require the yummy cocktail (yea, right – not even close) of Go-Lightly to remove it. The original plan was to have Danny drink that throughout the day and we would hope to see the blockage be gone! On my way in this morning I grabbed some good chasers (got to have some other taste to replace that med!!), we had Dan eat a few heavy liquids to provide strength – but not add to the problem, and he was gifted a cup of coffee – ya know to wake everything up! And then we waited….and waited …..and waited…


End result? Hospitals are just like any other place of business, things happen. Our nurse was excellent and continued to page the Docs to put the orders for the Go Lightly into the pharmacy. Each time they looked, they saw it was there and figured someone else had done it. Well, that order was from yesterday. So while we kept waiting for updates Danny was encouraged to walk, headed to some physical therapy, I read aloud our new book, we tried a few new Netflix shows….. the hours were worked off, but still no meds came. At about 6PM tonight we got the result – “oops! the orders weren’t read right”…. and now that everyone discovered that was yesterday’s order, they were ready to get the prescription in and up to the room by 7PM. Well as you all know Dan has been trying desperately to sleep better, so taking something that would require in and out of bed all night is not really going to help with the whole sleeping thing. Danny passed on that idea and we will start this process tomorrow morning first thing.  This also meant that I could go to the hotel for some real sleep – and I am grateful for that decision.


So the obvious question – well what about everything else? What about the lungs? How about the steroids? All the reasons Danny was admitted in the first place. The steroids have been going as planned, but one of the primary reasons Dan was in the hospital was so that his sugars could be managed while these powerful meds, that are sure to make them go crazy, are administered. But Danny has not eaten a true meal since Monday at lunch……so the sugars being stable right now aren’t really a true indicator of what we can expect. And as far as all the other questions marks and issues… ummmmmm, yea we don’t really know. That sounds really crazy, and sorta unbelievable – how have we been sitting in those walls ALL DAY and don’t know the answers to those questions. All I can say is that the hospital can be a time warp and we have been focused on the blockage that waiting on the meds seemed like the right thing to do. So to get to the end of another day without any further answers or plans – yea, we are feeling pretty dumb about it too. I don’t really know how it happened, but it did and tomorrow is another day.


The thing I will remember most about today? Danny and I took our first walk downstairs since Monday. We walked around the gift shop, we traveled down to the little cafe area, we sat on a few different benches …. and I felt like I was on any other city sidewalk. We shuffled along as part of the crowds of hospital staff, visitors, students, patients – everyone with somewhere to go, someone to talk to…. people weren’t just in hospital gowns or scrubs, but suits or jeans – for a moment we joined the land of the living. Sure I walk these corridors every day – but it is usually in a blur just hurrying to and fro: off to get food, racing from the parking deck to Dan’s room. I am not part of the crowds, I am the fish trying to swim against the stream, just getting to where I need to go. Not this afternoon, today we were just part of the human race.


It is in those moments I really appreciate just regular old life. How nice it will be to get back to just grabbing lunch with a coworker or call my mom as I go about my busy day. Without a doubt, living in hospital wear it is always in these times that I promise myself to take pride in my daily outfits and enjoy that I get to make a statement to the world again one day and not just be the frumpy girl in tired yoga pants. When these opportunities to observe life include Danny, it does something very special for me: I remember why I fell in love.


During these really hard hospital days I am going to be rawly honest, I begin to wonder. Am I even right for this job? Will we ever see life beyond professional patient and caregiver? It is so challenging to keep yourself moving forward – and especially this time to need to deal with others during it – I wondered if we would survive it. In some ways we had found our way to the promise land…. new lungs. So when the same fears and frustrations reappear, I can’t help but think we have missed the exit – we are on the wrong path. As I have said, those moments have brought me to my faith and encouraged me to cling to God’s promise of help- something that I originally saw as a sign of weakness, that I am now learning is a gift. Yet, your heart still worries and hurts.


Today, as Danny said “go ahead and buy that book, we can read it together” or we grabbed him a soda pop from the coffee bar – I was transported from hospital life back to my life. As we sat and people watched, wondering when we had become so out of touch with the fashion of straight leg jeans or hipster beanies, we had a good laugh. As I watched people take in Dan’s eyes clouded with pain and glossy, dragging a full IV pole, and breathing behind a mask – I asked him if he ever wonders what other people have wrong with them they way they seem to wonder it about him. We were just Dan and Jac – taking part in life, laughing, talking. Something that has felt out of touch for awhile and in that instant I felt like the Grinch and my heart grew triple in size. Just simple ways of feeling like a team again – and I could have been in the islands on a fun dinner date or dancing in the rain like the summer of 2005….. and yet, there we were right in the middle of the hospital. It is in those moments my heart is washed away of fear, wondering, and frustrations and I am assured that if a 45 minute hospital “outing” can bring that much joy- just imagine what life could be after this time – with all the healing behind us.


We have a lot of different things at play up here in Baltimore….. more than I would have guessed and less of what I would have expected. But I can’t deny the power of hope that these moments so clearly define (not without time, pain, and prayer, mind you) and even the growth it has produced. Cementing our foundation, helping me to find my voice, allowing Danny to realize the real possibility at life. I have no idea where this path is going….. but I trust as I travel it.


Tomorrow is the feast day of our patron Saint, Andre Bessette, and we ask for his intercession as we move forward. Thank you all so much for reading, commenting, and praying. And thank you to God and my guardian angel, my Gandaddy, for hearing my plea for a sign this is all going to be ok.


God bless,

2 thoughts on “Hopkins Remix – Day 4

  1. Glad to hear of two special people speaking to your hearts….Gandaddy and St Andre Bessette! That is a perfect duo to have lifting you up! God Bless!!


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