a bittersweet goodbye

This will sound weird, but leaving the hospital can be bittersweet.  Discharge can be filled with so many emotions: excitement to be home, anxiety to be the sole caregivers, worry that you will miss a warning sign and fear of a re-admittance.  But the hardest thing to describe is how a group of individuals doing their job can easily become like family.  For 100 days I spent twelve hours or more a day in Lucy's hospital room.  To give you an idea, that's thirty work weeks. (assuming you work 40 hours/week)  That is over 1/2 a year of work.   Just think about the co-workers you like (we all know there are some we don't) and what relationships you can form within that time.  Here is what I know, not only did they care for and love Lucy, but they made my days tolerable.  And that's not an easy feat.  When you don't see an end in sight and someone can walk in the room and put a smile on your face, it speaks volumes about the type of people who work in the Surgical Heart Unit.  I can't say enough good things about the team!

As you can see our extended family is pretty fabulous

Discharge was not like any other we experienced.  Due to having to draw labs up to the very last day and the fact that she had no open real estate for a picc line, we were discharged from the ICU instead of moving down to Floor 2.  The last week we had been fine tuning her warfarin, potassium and sodium dosing.   The goal was to get a schedule that was manageable at home.  To me, the schedule didn't matter, I would have given medications every hour through the night if it meant we could go home.  On top of packing up the room, getting our home medications ordered and figuring out tolerex, we also had to change the bridle holding the NJ tube.  The bridle, like an NG tube needs to be changed every 30 days.  We thought it best to change it, right before discharge instead of at a follow up appointment because we were able to give a dose of versed.  However, after changing it, I am convinced that versed does nothing....Lucy screamed bloody murder through the whole thing.  If you aren't familiar, the bridle is a string that is looped around the vomer bone and secured with a clip on the NJ tube.  To place the string there are two flexible tubes with a small magnet on the end.  A tube is inserted into each nostril until the magnet connects and then it is pull through and clipped.  I do not look forward to doing that again!
By 7 pm on Friday night, the room was mostly packed into Mike's car to be brought home, all but one medicine was received and tolerex was to be delivered Sunday.  My room at Ronald McDonald House was also packed except for necessities.  The last part of discharge was to review medication doses and timing , feedings and review appointments.  Let me tell you, it's a bit overwhelming, even though we've done this before.  The biggest change is that multiple medications have to be cut and dissolved.  And the sheer number is steep.  Her current medication list is



Bumex
Bosentan
Potassium
Sodium Chloride
digoxin
diuril
aldactone
Sildenafil
warfarin
aspirin
multivitamin
melatonin
colace
pantoprazole




She gets eight medications at 7 am and 7 pm, then multiple medications throughout the day at 1 pm, 4 pm, 6 pm and 11 pm.  Her feeds will run from 4 pm to 4 am at 60 mL per hour.  She is still not allowed to drink liquids due to aspiration and we are still working off a fat free diet.

However overwhelming, it doesn't matter because..........WE ARE FINALLY HOME

It's hard to believe it's almost two weeks post discharge.  We have had three follow up appointments for labs and x ray, all which have looked good.  Today we go for full appointment with Lucy's cardiologist.  Stayed tuned for an update on our appointment and what it's been like at home.

Till then...