10/28/10 (Living w/ Spinal Muscular Atrophy)

So a lot has happened over the last couple of days.  Seeing Jenna failed at re-starting her feeds, a CT Scan w/ Contrast was ordered.  The docs thought they were dealing w/ the small intestine, but the CT Scan showed it was really the large intestine that is affected.  It also showed narrowing of the intestine which suggests possible disorders or disease.  A biopsy was then ordered to confirm or deny it.  Overall she did well w/ it, but today she was not herself.  She wasn't laughing and playing w/ all the nurses and therapist like she had been.  A little whiny and whimpering periodically throughout the day.  She said she wasn't in any pain, so maybe the yesterday just took too much out of her.

We have discussed w/ the docs on our concerns of feeling like we are never getting out of here.  We then discussed the possibility of of TPN (IV Nutrition) training and possibly being able to come home w/ it.  That would entail an RN coming to the house @ least once per week to change her PICC line dressing and draw labs.  But we'll do what we have to do to just get her home and keep her there.  It has just been way too long being here in the hospital.

On a good note, Jenna has been receiving PT and OT here.  The therapist have been great and Jenna loved finger painting the other day. She has also started Speech this week and she is having a great time w/ them as well.

Tomorrow Child Life is celebrating Halloween by having a Halloween parade  Everyone is welcome to dress up in their costumes and even pass out treats.  Of course if Jenna goes, she will only be participating on the "clean" floors!  : )