Wednesday, January 2, 2013

Home Again!!

From CaringBridge.

We are HOME!  Ella has no line!!  

As planned, we made it home Monday afternoon, New Years Eve!  Her last dose of antibiotics was at noon (started 30 minutes early for the nurse), then they had to weigh her and remove her PICC line.  They had us wait another 45 minutes to check the PICC site to make sure it was clotting up before letting us go.

What a wonderful way to usher out the most difficult year of my life (and I hope that was the most difficult year ever for Ella)!  I don't think I've ever been so happy to see a new year come... bring on 2013... health, growth and happiness!

We still have to be careful with Ella's movement as not to reopen the PICC site.  I'm sure you are not surprised that I was not happy with many of the dressings done on her PICC site by the nurses.  I understand they needed to use a pressure bandage after removing the PICC... but it's made of very absorbent material, not good for its placement.  Once it got wet (from being in her diaper) it pealed away and stiffened up.  

They wanted me to keep that dressing on for 24 - 48 hours and then change it out with some medical tape.  It didn't last 18 hours (and that was stretching it) and when I took it off the gauze at the site was urine soaked.  I used an alcohol swab, against the nurses advise upon discharge (she said it could reopen the wound), I felt I had no choice but to clean it before covering it back up.  The wound did not reopen. And I'm very impressed with my dressing!  I used supplies I had on hand from her central line dressing and it continues to last some 30 hours later.

Not bad for a crash course in nursing over 2012!

As of my last post, Ella did go back on TPN last Friday night with the intention to keep her on it each night for a "boost" before she went home without it.  

What I didn't mention is that an obvious side effect of having her line removed and stopping the TPN the week before was a complete change in Ella's temperament.  She's always been a bit on the fussy side.  She never let us put her down or took to her swing, bouncy seat, etc.  She didn't like to be put down on her back and hated tummy time.  

Almost immediately after being off the TPN Ella became a much more content baby.  I was able to lay her down in her crib in the hospital for significant periods of time while she played with the toys we had for her.  I was able to wash/prepare bottles, eat a meal, etc.!  This was unheard of... and very welcome.  Overall she just seemed happier!

So the night they put her back on TPN, the next day the fussy baby returned.  Grandma and I discussed it and Saturday afternoon I notified the doctors that I refused any more TPN for Ella.  They took it in stride.  No doctor has ever heard that TPN impacts temperament/disposition but they seemed to believe me (they said we know Ella best).

We had a wonderful New Years Day... which was Christmas Day for us!  It even had a feeling of Christmas as Grandma, Natalie, Ella and I sat around the family room/Christmas Tree, had brunch and opened gifts!  

Grandma is heading out on Friday... it's going to be an adjustment for us but we can handle it.  The hardest part for me will be that Ella continues to need to be fed every 3 hours day/night.  I will likely increase the frequency of visits that the Night Nanny comes (currently 1x/wk) to allow me a full night of sleep (9pm - 6am).  I can do it.  Hopefully in another month or so we can cut out one of the night feeds again... right now, BECAUSE SHE IS OFF THE TPN the 8th bottle is necessary for her calorie intake.

Now, I must go to sleep... yes, it's only 8:30pm but I have to sleep when I can.  

Happy New Year!!

Go Gators!!