Skip to main content

Surgery postponed...unhappy momma

Back in September after our ugly accidental tube removal & multiple failed replacement attempt incident (more about the incident & frustrating phone calls that followed here and here), I decided it was time for Raya's big puffy scar tissue to be removed. Her GI and I had been talking about it for a year or so, but it didn't seem necessary until we had a problem. Here's how it looked in September:
Big puffy scar tissue. We had the surgery consult in September & scheduled it for November 19th, aka today. November 1st, the GI doctor and I decided that it would be better to move it from the outpatient surgery center to the main hospital so she could do an EGD (endoscopy) at the same time, so the GI scheduler was going to work on getting things coordinated with the surgeon's office to move the surgery to Tuesday the 20th, aka tomorrow.
Long, irritating story short, I'm not even sure to be mad at but somebody didn't do their job, everybody's passing the buck, and Raya won't be having surgery tomorrow. They have no idea when it will be happening. I was told that someone would call me when they get things figured out. I've heard that line before though so I'm not holding my breath. It just makes me angry thinking about it though. It shouldn't be this difficult for people from 2 different doctors' offices but within the same hospital to communicate with each other.
Not that I was thrilled about her having surgery 2 days before Thanksgiving, but it needs to be done and our calendar is only going to fill up more in the coming weeks. I just want to get it over with. It might be a "simple" outpatient procedure, but nothing about handing your kid over for surgery is EVER simple. This stuff is never simple for her either. The bottom line is that they had almost 3 weeks to coordinate their schedules and they dropped the ball. All the schedulers want to do is blame each other. Very very frustrating when you can't get people to do what they're supposed to be doing so your child can get what they need.

Just so I don't end on a sour note, I'm happy to report that Raya has once again eaten almost a whole 4 ounce container of applesauce. She's ready to eat when she gets home from preschool, and Kaida usually is too so they had lunch together today. Raya has decided that she might actually like applesauce, which is VERY exciting for me because she doesn't really eat any fruits or vegetables regularly. She won't really even eat much potato now, she just eats the butter. So thankful I have these sweet girls to remind me of all that is happy and positive in life!

Comments

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 …