busy day

Eve and I had a very busy day. We started with a visit from the Pediatric Palliative care nurse and a wound care nurse.  Eve's stoma has had lots of leakage (her shirt was soaked this morning) and she has skin breakdown.  So, after looking at the stoma, the wound care nurse came up with a plan of attack, but needed to get supplies first. 

So, then we went to coffee with 2 of Eve's favorite teachers.  The joys of living in a small town include going to a public spot and seeing many many people you know.  It was awesome! A great time was had by all.

Then, we rushed home to meet the wound care nurse who now had her supplies.  She showed me how to stabilize the button (which should help with the granulation tissue) and felt that the redness under the tube was because of pressure where the tube rests on her skin when she's sitting up.  She recommended a conservative approach to start.  She put a bandage like thing on her skin (that won't pull the skin when removed) and then placed steri strips over the button and to the bandage.  She then gave me some Calcium Alginate to put under the button to absorb extra drainage and keep the area dry. 

I felt great since we had a plan.  I gave Eve her afternoon meds and put her down for a nap.  When I got her up 1.5 hours later, the Calcium Alginate was soaked and the bandage thing was starting to peel up.  So, I called the pedi palli nurse and she came out for a visit.  But, this time the strip of C.A. was nearly dry. 

After looking closely at the button and stoma we realized that the port was not sealing properly after I gave her the meds.  The port leaked out part of what had been inserted.  So, we made a few calls to the GI and to the department that placed the gj.  The GI is on call tonight and was supposed to call us back (we talked to his nurse at 4:30pm).  It's 9:30 pm and he hasn't called back.  I guess he's not going to.  The radiology department doc thought that her stomach was full and that we should give meds through the j port.  That freaks me out because I really really don't want to clog the j tube. 

Anyhow, when we disconnected the feeding tube from the j port it leaked, too.  A lot faster than the g port.  So, I don't know what's going on.  I don't know if this is usual for this type of tube, or if the button is defective.  We got this low profile gj to make things easier - not to cause more problems. 

So, the concern is that her meds will leak out and that the constant moisture will cause further skin breakdown.  It's complicated, but the closure for the g port can't be used when she's getting her feeds through the j port (20 hours a day).  So, we'll need to leave one of the extension tubes connected in the g port until we figure this out.  So, now she'll have two tubes hanging out of her for 20 hours a day.  Great. 

Hopefully we'll hear back from GI tomorrow.