Skip to main content

One more night

It appears that we'll be spending one more night here. We had a wonderful surprise visit from Raya's GI doctor, whom I love dearly, and we discussed everything that's happened this week. To put it briefly, the overnight feeds weren't tolerated as well as we had hoped and she's lost a little weight since we've been here. Even though we're feeding her directly into her intestine now, she's still vomiting. I'm regretting ever having complained about the formula vomit because empty stomach vomit is WAAAAAAYYYYYY more disgusting. The extension tube that was plugged into her G port overnight smells like a skunk. She's been throwing up either fluorescent greenish-yellow bile or dark grayish-green stuff that looks like pond scum when it's coming out of her mouth but then somehow manages to dry almost clear on her shirt. It smells horrible too. So yeah, not going to complain about formula puke EVER again.
Anyway, she also had a consultation with the geneticist last night about the possibility of mitochondrial disease, which we're all pretty sure she doesn't have since she doesn't really match any of the symptoms. He ordered a couple of blood tests but said that he doesn't expect them to come back positive and most likely won't need to see her again. He was a lovely man but I'm glad that we won't be spending time together regularly. :)
One good thing is that the bleeding in her stomach seems to have stopped. She's going to go off of the med she's been on for that & hopefully won't have a recurrence because I'm ready to be done with that stuff. It was the main cause of my sleep deprivation for the past month. The new cause of my sleep deprivation once we go home will be her 6 doses of water per day. I know, it sounds funny that she's been prescribed water but she's going to be switching to a higher-calorie version of her current formula and will be fed at a much slower rate so she'll need more fluids than just what she'll get from the formula. 'Twill be interesting. :)
So anyway, we're hoping that the new formula/feeding schedule will go better and she'll be able to gain a little weight by tomorrow and then we can go home. That would be fabulous.

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 …