Much Better Day

Today has been a much better day. Hadley is still continuing to get over the virus but today seems to be the first day she can tolerate qtr. strength again. Since Monday she has been pretty much on pedialtye. We tried a couple other times with qtr. strength but then she would cry in pain. The dietician should be calling back but I think her plan for Hadley tonight is to move to half strength and see how she reacts.

We got out the video camera today. Whenever Lenny would laugh a funny laugh out loud at her she just shrieked and giggled. Then I would start laughing at both of them and she laughed even harder. Much better day than the rest of the week has been-for sure!!

Unfortunately we had to continue with TPN (her bag of nutrition). I'm hopeful to unhook her by Tuesday. Hopefully they will still take the line out Friday. If not I'm guessing it would be the following Friday. Its just so different how a virus can throw her out of whack and then once she feels better she can quickly work back up to 3/4 strength formula.

For those who aren't quite sure what a central line is I'm posting a picture. This was at 3 mos. old while in the hospital. Its almost like an I.V. but it comes out of the chest and is threaded through an artery to quickly disburse her nutrition. It doesn't bother her at all. In fact, until recently she barely knew it was there. Now that she is really grabbing things and putting things in her mouth we have to watch her. She tries to eat the tubing and can get the caps in her hands and try to put them in her mouth. Each night I use a syringe with a needle and draw out liquid baby vitamins from a vial. Then I insert those through an opening in the bag of TPN (the bag of fluid) and shake it up. Then I hook up the tubing to the bag, then prime the tubing. When we are ready to change her out, Lenny changes the batteries in her pump each night and gets the bag in place in the backpack carrier. While he does that I unhook her line, flush the line with a saline syringe and then hook her back up. Each time I go to do anything I have to clean the area with an alcohol wipe. I've gotten pretty good holding three things at one time. You learn to improvise. Most of the time she asleep while we do this. We found it easier to do it this way. She tries to "help" if she's awake, and you don't want her hands touching the sterile areas.

Each Thursday I change the dressing that covers her line. Its not hard for me now that I've done it a few times, we just have to wipe everything with alcohol wipes, and keep our hands sterile along with the line site. I swab the area with 3 alcohol swabs and then 3 betadine swabs-without going over the same area. Then we cover it back up.Never in a million years did I think I could do this. I couldn't handle it when she had her 2 mos shots!