Day 20

We’re home J

The morning went well except K was a little bit crabby.  I guess that’s to be expected with all the steroids they are pumping into her.  We knew today MAY be the day we would go home but I wasn’t holding my breath.  I kept feeling her head every 5 minutes waiting for the heat but thankfully it never came.  Again, I didn’t get my hopes up so I didn’t pack but instead pushed Kennedy into the playroom for some dollhouse action and a little arts and crafts.  Of course I made her wear a surgical mask the whole time (germaphobe mom on the loose).

Got a frantic call from Gene this morning too.  Apparently he was all ready to go to work in his car, (that’s why his dad drove him home from the hospital last night) but I had the only pair of keys in my purse (at the hospital).  He was not too happy with me.  Thankfully grandpa came to the house and let Gene have his car for the day.  I am lucky to be alive after that one!!! 

Around 11am we got the news, we could go home – woo hoo.  I ran back to the room and packed up everything fast.  We accumulated a ton of stuff over 7 days but I managed to clean house in about 10 minutes.  The social worker arranged for the pharmacy to drop off the antibiotics we would be administering through the port and also said they arranged a nurse to come to the house.  The antibiotics were due at 1 but she could get them as late as 3pm to stay on doc’s scheudle.  To say we were elated is an understatement. Texted Gene too and I am assuming he did a happy dance.

We got home around 12 and the antibiotics arrived around 1:30.  At 2 I started wondering…where is that nurse?  Thankfully I took the number down for Reli-a-care (or something like that) and made a call.  They had NO CLUE of what I was talking about.  Finally, Doris, our nurse, called me back.  Apparently they knew they were going to take care of us but never got the confirmation call that we were released.  Doris got to the house around 2:45 and trained me how to administer Cefepime through the port.  

We need 2 flushes, 1 antibiotic and 1 heparin syringe for each dose.  The antibiotic is administered over 10 minutes at 1ml each minute every 8 hours, around the clock. With a flush before and after and concludes with the heparin.  The dose was prescribed for 10 days, which is much longer than Dr. Manera told us (he said 2 weeks, starting with admittance date).  If the 10 additional days is correct, she will need her port de-accessed and re-accessed at clinic on Friday, which will mean another pokey for K (yikes!!!). 

Kennedy is happy to be home and came home to a ton of packages.  She was thrilled.  Maddox was so excited, he was showing off one of his new hats (a swim cap that dad bought him).  He got all dressed in his swimwear to model his new head-piece.  Kennedy also modeled some great new hats tonight from friends and neighbors (thanks!!!).  She is happy to have them but doesn’t feel a need for them quite yet as she still has some hair that is hanging on.

Kennedy had a bath for the first time in 20 days.  It was a quick one since we have to be cautious of the port.  We also put her earrings back in.  Everything has to be done so cautiously so I dipped both of her ears and earrings in alcohol and wore gloves and a mask to put them in.  She’s happy.  Dad administered her port antibiotics tonight.  I’m sure a picture of us would have made everyone laugh.  We both had gloves and masks on and were sterilizing everything.  All the while, Kennedy was munching on string cheese.

I work tomorrow.  Dad and Kennedy will hang out at home and Maddox will be back at school.  It feels great to be home with the family – it’s the most normal night we’ve had in a long time.