Back at the Maize and Blue

Here we are; mid-way through Day 2 back at 7-West in University of Michigan’s Bone Marrow Transplant Unit.  I’m back to delving into research on the internet and Scott is sleeping.  I’m not sure that I’m glad that he’s sleeping again but at least he’s not concentrating on how much he is itching.  It seems that he might be allergic or at least sensitive to the Vancomycin that they are giving him for a blood infection. 

I think I have mentioned that for the past month, he has been on the edge of going downhill or at a minimum no longer improving.  He’s been sleeping 80% of the time and has lost his desire to go outside and work on his projects in the barn.  He’s still not eating like he should and he’s lost 10 pounds of the weight we worked so hard to put back on.  Not only is the sky outside grey, his mood and therefore mine is a dull shade of grey or just plain blah. 

Not sure how I got him to pose for this picture ten years ago – he probably wouldn’t do that for me now that we are married….

When we went to his appointment on Monday, we impressed upon the Nurse Practitioner his lack of energy and desire to do anything.  It was time to push for more tests to get to the bottom of what was keeping him from progressing.  Was our darkness caused by the mental disappointment of being past Day 100 and not being “better” or was something really wrong?  We both needed to know.  I know for me, being in the depths of despair for about a year I was reaching my limits.

We were both worried yet relieved to hear that the tests showed an infection and that they wanted to see him back at 7 West.  It confirmed that something was really wrong.  That meant a quick trip to the store to check on things and make Wednesday’s lunch special, followed by making arrangements for the dog and throwing a few things in the over-night bag for a one-way trip to Ann Arbor.  Being in any ER is a real stressor, but maybe more so in a large city.  Everyone there is stressed out and seems to think their problem trumps everyone else’s.  I just wanted to get out of there before we ended up with COVID with people coughing and sneezing all over the place.  We managed a room in a little over an hour and then were cared for in a small cubicle.   Transport upstairs to his room took a little over 6 hours which we hear is really good.  Good thing I packed snacks because they weren’t serving supper by the time we reached his room at just before 10 p.m.

There is a certain amount of comfort seeing the same staff again and knowing that the 7th floor comes with privileges that aren’t allowed in most areas of the hospital.   As much as I am able to observe and report while keeping my vigil, I can’t imagine being forced to leave at the end of the night.  Not only can I see changes and things that cause me concern, I am here to catch him when he is unable to communicate all that is going on with him.  Last night he was very spacy and avoided a near fall.  I know that if I had not been in the room to get him back to bed he would have certainly fallen on his way back to bed and who knows how long it would have been until they found him.  Not at all a dig on the staff or hospital but just the way it is.  They can’t be in all places at all times.

It was somewhat reassuring to hear them all telling him what a good job we had done if this was his first trip back since his transplant.  Knowing that a return visit or two is almost expected helps make me feel better.  Hearing that he had an infection in his lumen on his port left me feeling even more defeated than I had been.  Knowing that I had likely done something less than perfect that was causing him to be sick was very difficult.   They have been good at trying to reassure me that these things happen under the most perfect of situations. 

We’re here to get to the bottom of things.  I’m glad we got back here before the infection(s) got to a place that they were at feverish levels and caused irreparable damage.  Still scared to know that there are several things working against him; one of them being something that could cause long-term kidney damage if they don’t get it turned around.  We have a great team of doctors and nurses looking into things.  I love how the doctor on rounds listened to Scott, then turned to me and said, and how is he really doing?  That’s perceptive. I don’t know if Scott’s that foggy or will always be the eternal optimist that doesn’t want to complain. 

Don’t you wish more people were like that?  As I sit in the hospital dealing with all the uncertainties, I make the mistake of looking at Facebook.  As much as it can be fun, entertaining, and full of great photographic moments, you have to shake your head at what some people share.  I’m still waiting for some of those emoji’s they talked about adding; something to the effect of WTH and you’ve got to be kidding me.  So sorry to hear of your hang nail or bad hair day and the likes. Maybe if people only knew how difficult life could be they wouldn’t be so quick to put things out there that most of us see as very minor disruptions or inconveniences in comparison.  That being said, I’m just as guilty. I’ve looked at blogs written by some of my readers from other countries and I feel that even what we are going through pales in comparison to the fears that so many people face. Wondering whether they will live through the real battles going on around them and worries about where their next meal will come from. How they will manage to raise their children in horrible conditions.  We all have our own version of hell to wade through.  Being here and seeing all the children and parents makes me realize that someone always has it worse than I do. Having the whole “flock” of people supporting us is sure nice; I know that not everyone has that and we are very thankful for all your support.   You know I’ll keep you posted as we learn what they find.    

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