All Systems Go!

The overnight duffle packed, dogs care in hand, it’s 7a.m. and I’m pacing the kitchen, waiting for the phone to ring. Totally sleepless night and ominous looking day…very overcast and just cold enough for snow.  I had no idea where we were going, only a rough idea of how we’d get there and enough time on my hands to begin wondering how in the world I’d ever be able to drive such distance alone, being a novice driver.  I had called no-one…not Blanche nor my sister, no friend until I was sure this placement had been secured and covered by CHAMPUS.  A full pot of coffee…and probably full pack of cigarettes..later, the phone rang.  “Are you read to hit the road?  We got a verbal, all systems go…tell me how to get to your place and give me twenty minutes…”  The woman from last night sounding as excited as I was.  Half-an-hour later we were on our way to Baltimore, an ambulance having been ordered to meet us there.  When we arrived, first hiccup…the EMTs assigned to transport us said they couldn’t do it.  Fred was on oxygen, they did not carry enough for his needs and a five hour drive.  Oh, no…you’re not doing this to me now, I thought.  “I don’t believe he needs it to be continually running,” I said.  “I’ve seen him without while they were bathing him…let me find a doctor…”  Just then I spotted Dr. Patrick coming down the hall.  He wasn’t one of Fred’s doctors but familiar with his case.  Calling to him to wait, I asked him how dependent Fred was on oxygen and told him why I asked.  He said he wasn’t…maybe five percent but they had him connected because it was a purer source.  By then he had joined our little group outside Fred’s room and he assured the EMTs there should be no problem taking Fred off the oxygen for this journey.  What they normally would carry would suffice.  Time…what was the time?  For they were now telling me the ambulance was on it’s way to take Fred to the convalescent home in the city.  Panicking, I’m looking from one to the other, to two others…somebody decide!  Our EMTs suddenly said, “Let’s go…” and in the went to get Fred on the gurney and down to the ambulance, me running behind them.  As we got to the elevator, the woman from the night before, now I’m considering my guardian angel, yelled “Nancy…did you eat breakfast…or anything, today?”  I did not…she reaches in her purse and tosses me a banana!  I couldn’t help thinking how appropos…I was already feeling like the organ-grinder’s monkey going through his paces!  “Eat this..potassium!”  And…awaaayyyy we went.  I sat up front with the driver, noticing the skies becoming darker.  All was quiet in back…Fred wasn’t choking, having any respiratory difficult…only a few minutes out of the city and so far so good.

It wasn’t long before the snow started and it was bitterly cold.  I kept asking if they thought my husband was warm enough.  The guy in back assured me he was doing fine.  Then about an hour later I heard choking and gagging.  “Oh, God…I’m killing him with this travelling!”   I have to be honest…I had no idea what all this moving, travel, no oxygen would do to Fred.  At best, all I could think was I’m trying to do the best I can for him.  Maybe I WAS being desperate and, I supposed, there was a possibility my insistance on this might just be his end…in which case, I knew I did my best which was better than doing nothing.  If I did nothing at all but let hospitals, nursing homes, social workers tell me what THEY were going to do, Fred would never be any better than how he was.  Maybe what I was doing was risky but what, really, did Fred have to lose?  His life?  At the moment and for weeks now, what was that worth to him?  Trying to look in back to see what was going on all I could hear was the gurgling and gagging…but it wasn’t as bad as I had feared.  He had gagged and begun to throw up but the EMT assured me h had it under control and, within a few minutes, all was well again.  I had learned that we should arrive at our destination around 6pm (depending upon how well the weather would hold up) so now I had time to think, plan (Plan? What, exactly?!), raise some hope, be curious as to what they would or could do for Fred, if anything.  At the same time I was also wondering where I was going to stay overnight or, if I left tonight how in the world I was going to get home.  Probably bus or train but I had no idea from where.  Nothing but questions, no answers and I didn’t care.  Think that was when I finally learned to live in the moment.

Frederick, MD…Deep Creek Lake, Cumberland…Morgantown, WVA???  Where was I?  Totally unfamiliar with this part of the State but the beauty of it didn’t escape me.  For the first time in a long while, I was at least enjoying something.  Just a few minutes after 6pm we rolled up to the entrance of the centre.  New Medico was it’s name…though not any longer as it was bought out a few years later.  The director and several nurses were waiting to greet and welcome us.  Immediately they wheeled Fred off to get him comfortable and settled, I’d get to see him shortly.  Now the process was to be explained to me.  First, they were going to begin immediately, weaning him off the trache.  They said coma patients always seemed to do better when that was successful and they were breathing on their own.  Second, there would be medication changes…the first would be changing the Phenobaritol to something else…it was “highly addictive and if he should recover this could be a problem…”.  They had other anti-convulsives in mind.  He would be assigned his own nursing team, each team having a very few patients for whom they alone were responsible, giving them time to get to know their patient very well and vice versa.   They would immediately begin therapies…Physio, Recreational and Speech.  I have to confess the last two had me wondering how they would do that with someone who just could not respond but…they were the professionals and, at the very least, were willing to do something.  He asked me if I had any questions so far…none, at least not pertaining to Fred’s care.  It did occur to me that we had not discussed cost, insurance, payment, nothing financial but decided I didn’t want to worry about that just yet.  I knew CHAMPUS was involved and, when necessary, we’d go from there.  So I asked if there were any hotels in the area…having noticed not much of anything within a few miles of the centre.  Very much relieved and surprised, I was told I didn’t need one.  They were providing accomodation, would have a cab take me there when I was ready to leave that evening and, if I would let them know at what time I wanted to return home next day, they would arrange…and pay for…a flight out of Pittsburgh to BWI.  Wow!!!  Suddenly I felt the taughtness leave my body and mind, Pfffffffftttttttt as many breaths I’d been holding escaped like air from a balloon.  “Now…are you hungry?  We have a family room where we can get you a bowl of soup, sandwich, some dessert and coffee…”  For the first time in weeks, I was ravenous and, of course, that was the best soup and sandwich I’d ever had!  They did everything for my comfort…better yet, they did everything in short order for Fred’s and when I’d finished eating they told me he was settled and would take me to his room.  As we walked up a hallway, a young man in scrubs came towards us and stopped.  Introducing himself, he then said he wanted to let me know that when I went in to see Fred I’d notice something changed and, possibly, a little blood.  He was a respiratory tech and had changed the trache to a different canula…which might cause a little bleeding…and this was the beginning of the weaning, hopefully closure, of the trache.  This process would take a few days but not to be worrying.  The room Fred was in was very pleasant…wallpapered and painted in soft hues, lamps…I noticed a cork bulletin board on the wall by his bed and was told this was for photographs, cards, notes from friends, anything which could be tacked up there to both brighten his space and help with cognition when or if that day should come.  “Bring stuffed animals, favourite music, fragrances he liked…tomorrow we’ll get a list of his favourite foods and those he just didn’t like at all, anything you can tell us about his personality will be helpful…”  When the team  left a few minutes later I could only sit on the chair, take Fred’s hand and weep.  Somebody listened, somebody is willing to try.

An hour later I was ready to go get some sleep…little did I know that it would finally be the best sleep I’d had in weeks, if not the only.  The cab they had arranged took me the couple or so miles to Canonsburg proper, stopping in front of a row house.  I went to pay the driver and he refused…also taken care of already.  I’d been given a key as I was leaving, couldn’t get the door unlocked fast enough and when I entered…more surprises.  Nicely appointed living area with couches, lamps, rugs.  A tv smack in the middle of a large wall unit, radio. Into the kitchen I investigated cupboards which had dishes for any meal, a few packets, packages, boxes of such as sugar, cereals, seasonings.  The fridge contained a fresh carton of juice, ditto milk, butter, eggs, bread, some yoghurt cups, jams, jelly and peanut butter.  Upstairs, two fully furnished bedrooms, each with twin beds, lamps, clock radios plus, of course, bathroom.  The cab driver had given me his card for next morning.  When I was ready to go out to the centre, I was to call him.  I did so around 9am, given that’s when visiting hours began there.

Fred had had a good night and they were very pleased that, unlike some, he did not have any adverse reaction to the journey.  Not even an elevation in BP which they had said to expect.  This was good…and, of course, I wasn’t daft enough to start expecting miracles.  Yet.  I caught my flight home later that day…yes, a bit concerned about Fred being so far away should there be an emergency and also giving great thought as to how I was now going to get up there to see him.  Among the paperwork I’d been given were details on visiting.  I could visit him ten days a month and, as long as I called to let them know, they would have one of their townhomes reserved for me.  These were shared facilities for the families of patients who lived distances away.  Sometimes, I heard, I would have one of the homes to myself, sometimes having to share with two others but if I wanted to bring a relative or friend with me and space was available, they would also be accomodated.  Things such as eggs, cheese, bread, milk, juice would always be stocked in the fridge for breakfasts or a quick evening meal but we could make anything we wished and, often, we would find the previous guest would leave bacon, sausage, ice-cream…whatever they had bought but did not eat.  At the centre, they strongly encouraged families to be very involved in the care and therapy sessions when visiting so we were welcome to be there from 9 until 9…and if there was a crisis, as long as we wished.  There was a family lounge, a smoking room, the little cafeteria where we would get coffee any time of the day or night…in fact, everything was there to make a pot.  Sign up sheets were posted each day, put your name on the list for lunch and lunch would be provided…soup and a sandwich.  If we were staying on, likewise for dinner…name on the list and dinner would appear for us at 6pm.  There were no additional charges for those services.  Once a month, we could take advantage of a flight from wherever we lived to Pittsburgh, paid for us.  I hate flying…figured I’d never use that service but now I had to figure out the route and find the courage to get behind the wheel of my car and just do it.

Published in:body-mind-spirit, inspiration, life, society, Uncategorized |on December 31st, 2008 |Comments Off on All Systems Go!

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