Hello,

Heather did come home on Thursday. The trip really wore her out and she slept most of the first couple days. We are busy trying to find space for and organize all the supplies. My living room looks like a hospital supply company, boxes and boxes full of syringes, meds, gauze pads, dressing and trach cleaning kits, pumps, tubing, saline flushes, etc., etc., etc. We are also learning how to use the morphine and TPN pumps, and how to give shots because the Lovenox can't be given IV.

So far, we have only had one major problem. Her brand new PICC line clogs really easily. It even gave the nurses at the hospital trouble on the first day it was put in. I had to call the home care nurse at 10 PM last night. What a trip! These nurses are not allowed to keep the anti-clogging agent on hand. She had to call the doc and get an order, then drive to the Home Infusion Pharmacy to pick it up ( a 1/2 hr drive), drive back, inject it in the line, then wait 1/2 hr to see if it worked. From the time I made the call for help, it took over 2 1/2 hrs til she got the line working. Thank god it worked because if it hadn't, Heather would be heading back to the hospital Monday for a new PICC line! We now double and triple flush the line before and after each use. At least it happened while the nurses were still doing the stuff. I would have felt terrible if it had been my fault. I guess Heather just got a fussy line. But what else isn't new!?! Nothing ever goes right the first time for her!!! She already had a Hickman that had to be removed because it leaked. This is her 2nd PICC line. She's on her 3rd feeding tube!

There is a bit of good news, though. The 3rd feeding tube, the J-tube, seems to be working. We have been giving meds through it just fine and have even been able to increase the amount of food given. Of course, we only started her at 20cc every 6 hours. That's only 4 tsps!!! It's hard to imagine that her stomach couldn't handle that tiny bit of food, but it couldn't. But the J-tube bypasses the stomach and goes directly into the small intestine. Too bad they didn't think of doing this several weeks ago. It could have made things so much easier for Heather. Oh well, at least it seems to be working now. Now I'm just hoping that the chemo treatment on Wed. goes well. Catch you all later!

Rainbows & hugs, wink
Rosie

Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.