Tuesday, November 21, 2006

Spoke too soon..

Well I spoke too soon about the pump. Night before last it errored about every half hour to hour which woke up em and me and all that nit so fun stuff. It was also pumping more than it should faster than it should. The home health care lady put in a call for a replacement to Apria and they were supposed to call me. NOBODY called, surprise surprise. Unfortunately, I woke up to our refrigerator bein dead and warm yesterday so I had to deal with trying to find a new that we could get by today and couldn't deal with apria. So anyways, We set up her pump last night and it kept having an occluded error, we checked everything, NOTHING was occluded, we even tried changing the bags and no deal. Then it would switch the other error. So annoying. so we laid off the pump and called apria after hours. The drrive had a few more calls then had to go back to the warehouse to get a new pump. He didn't get here until about midnight. so she started her feed a few hours late. This pump is the Kangaroo pet pump, I guess the one before was a slightly larger version. He said this one is for babies. It's actually pretty small and cute but still not the one we want/need so we'll be working on it. Here's for the good news. We got it all set up and after toying with it and a million errors got it working. It ran all night with NO erros, and it delivered the right amount of formula in the right amount of timie.YIPPEEE. We set Emma and the pump up for the swing hoping it would help her sleep and she slept ALL night. Double Yippee. I unfortunately didn't get to sleep until 2 a.m. and woke up at 7:00 a.m. Still better than before.
Unfortunately, Emma's reflux isn't any better. She doesn't seem to be puking/spitting up as much but more silent refluxing. We can hear it come up and then hear her choke/swallow it down whilst having this nasty look on her face. She was also in quite a bit of pain/discomfort yesterday. Poor baby. Last night I secured her tube in a million places so it wouldn't pull. It looks red/raw last night and I don't want it getting infected so hopefully that will help. She seems to throw up more after bottles. We don't really see her refluxing with the tube feeds. If I thought it was best we would go all tube feeding but I'd really hate her to lose the oral abilities she has. So we'll keep bottle feeding and I guess just dealing with the pain of reflux :(
On a side note, there is a piece at the end of the peg tube which is an attachment to hook the feeding set( tubing, bag etc.) to. There is a little plug which plugs it when not in use. It broke off yesterday so we were using it just not connected to the attachment. this just meant we had to be super careful not to lose it when it wasn't in. Yep, you guessed it. I went to flush her peg out after her feeding last night and couldn't find the darn plug. So I frantically looked with syringe still attached to the tube. No go. So I taped it all up with gauze and called the home health nurse. She was on her way down south and couldn't help but had me call the nicu. Anyways, they had the piece I needed. Hopefully it will fitl. It looks bigger but we'll give it a go! Oh, we did get to see one of our favorite nurses though. :)


Steph said...

Oh sweetie....I didn't realize you were going through so much (still). I've heard a little about the G-tube and have thought about getting it for Asher, especially after I found that his NG tube has eroded away a lot of skin at his nostril already :( AND APRIA....DON'T YOU LOVE THEM???!!! It took them 2 days to get us a pump that even worked (i.e. plugged into wall and NO "low battery" error). You'd think they would check the pumps before delivering them. I'll try to check in with you and Emma more often....Happy Thanksgiving to you! Love, Steph & Asher & Alexa & Aubree

SeaBird said...

Hello to a fellow Mom of a reflux baby! I just found your site on www.infantrefluxdisease.com. I also write a blog about life with reflux babies (twin 10 month-old boys, in my case) if you would like to read it: www.SeaBirdChronicles.com

Best of luck! SeaBird