Skip to main content

New Pump #3

Raya got a present from the home health company today. Remember how I said that one of the things I don't like about the Infinity pump is that the door is on the front so it's not very protected? Well, it's had a little crack in it for a few weeks and the little crack turned into 2 little cracks yesterday. The door wouldn't stay closed anymore and if the door isn't shut, the pump won't run. Big problem for a kid who's on the pump 20 hours a day! Luckily, holding it shut with a rubber band worked temporarily while we were waiting for the manufacturer to send us a new door. Home health surprised us today by bringing us a brand spankin' new pump though and I'm pretty excited about it. Sad, I know. :) As much as I love the adorable little backpack that her pump came in, I really want to make a new bag that would protect the pump a little bit more than the current one does. In all my spare time. :)

So the GI doctor called me back last night to tell me that Raya's labs looked good, meaning that she hasn't lost too much blood and doesn't need to get any blood products. Good news. :) She was also calling to verify that I had been able to get the prescription that I forgot to get from her at her office. I love it when I leave without stuff. :) The medication is called Carafate and what it does is adhere to protein, i.e. blood, so it will coat the "owie" in her stomach/esophagus and protect it so that it can heal better & more quickly. Hopefully it will work so she can feel better. Really though, it hasn't seemed to phase her much. The new med is throwing a wrench into my wonderful sleep schedule though. Instead of feeding her for 10 hours at a time, she now has to be fed for 5 hours, take a 45 minute break, have her medicine, wait 15 minutes and then start the next feed. I really have been spoiled being able to put her in bed and sleep all night so it's okay. :) Honestly, I'm just so grateful to have her that I will gladly take whatever she comes with.

Oh yeah, and she weighs 19 lbs 12.2 oz (8.96kg) and is 28" (71cm) long.

Comments

  1. That home health company has sure taken good care of you guys with all of this stuff Raya has needed over the course of her life.

    ReplyDelete

Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …