Look Who's Home!

Apologies for the lack of updates on Annie the last several days.  We got Annie home and have been spending all our time trying to get caught up on so much work around the house, and catching up on our sleep as well!  I've even surprised myself at my ability to take a 2 hour nap two days in a row and still sleep soundly for 10 hours through the night both nights!  It's so good to be back at home and get some sleep!

Annie was discharged late in the afternoon on Thursday, February 20th!  We got her home in time to have dinner all together as a family.  And I was grateful to open my birthday presents and eat cake with everyone all at home again!  What a great birthday present! ...Especially the chance to sleep in my own bed.

Annie's first night at home was pretty rough--I guess she missed having so much attention from nurses in the night, or she missed her fancy hospital air bed.  But the last several nights have been much better.  She has been sleeping straight through the night, even leaving her CPAP on clear until morning, which almost never happens.  I think she has been just as sleep-deprived as the rest of us!

Cheers for Annie coming home!

Annie is definitely one tough cookie!  Her last surgery was only a week ago last Friday, and all she ever received for pain was a dose of morphine as she left the OR!  Her incision from December's spinal fusion had healed up so nicely, but now the recovery starts all over with another huge incision.  It doesn't look quite as tidy this time around.  The orthopedist had to use non-dissolving stitches to help decrease the chance of more infection.  She'll see him again on March 6th and get all those stitches removed.  Until then, she continues to have her incision covered by dressings that we have to change regularly.  And it's always a challenge to keep those dressings clean in her diaper area, but fortunately, the diarrhea has stopped with the change of antibiotics.

Annie's "new" incision.  Starting all over on healing.

Justin and I are also one step closer to earning our nursing degrees!  We were trained on IV medication administration and after a few nights doing it on my own, I feel perfectly comfortable and competent.  The most important thing is making sure that we keep everything absolutely sterile so that Annie doesn't develop any kind of infection in her central line.

The picture below shows what we prepare each night when we give Annie her IV meds.  She gets two syringes of medication (on the right) that get connected to the tubing in the bottom left. We use 3 syringes of saline to flush her line before, between, and after each med, all followed by a heparin flush to prevent the line from clotting.

There are alcohol swabs (at the bottom) that we have to sterilize the port with each time we connect or disconnect anything from it.  And the blue caps are what we put on after we're done with the whole routine.  The blue caps have alcohol in the tips to help keep her port clean and sterile.  And of course we go through a lot of gloves (upper left) and hand sanitizer.

Annie's syringe pump is a new addition at the back of her dresser, next to her feeding pump now.  We put the medication syringes in the syringe pump and it slowly infuses each medication over 30 minutes.  The entire process of collecting the supplies and administering each medication takes about 1 1/2 hours each night.

Supplies for one day of IV antibiotic administration

Come to think of it, I don't think I've ever posted a picture of what her regular daily meds look like that we give her through her g-button.  It's a rather impressive sight as well, since she is on so many meds and several need to be crushed first, or mixed in applesauce, or dissolved in water.  I guess that part of our lives has become so normal to us since we've been doing it for so long, I've never thought to post about what that's like each morning and night!  Maybe that will be a post for another day.

We also have a nurse from our home health company come each Monday to draw blood out of Annie's central line to be sent for lab work.  They'll continue to do these weekly lab draws as long as Annie is on these IV medications, which we suspect will be for a year.  This nurse also will change the dressings on Annie's central line weekly.  Since one of Annie's IV meds is only stable for 5 days, we will be receiving deliveries of her IV medications every 5 days, meaning we won't be going on any long vacations over the next year.


It's going to be a long and difficult year, but we try to just focus on one week, or one day at a time.  We are grateful right now that Annie is healthier than she was 3 weeks ago, and that she has been so happy!  She has absolutely loved all the balloons she's received and continues to play with them at home.  She loves getting her fingers tangled in the strings and being able to pull and bounce her balloons all around!  It's wonderful to see her so happy and feeling better, and most of all, to have her home!