Skip to main content

A new personal record

Back in the day when I did track & cross country, a new personal record (PR) was a very exciting thing. Raya has set 2 new PRs that aren't exciting at all though. She PR'd in vomiting yesterday setting a new personal record of 9 vomits in 1 day. To make it worse, now that she's not being fed into her stomach anymore all that comes out is bile. It smells like a cross between a skunk and poop, so you can imagine how much I look forward to cleaning that up all the time when we go home. Can I please have the formula vomit back?? Her other PR is for the longest hospital stay. I could have lived without either of those. :)
And speaking of going home, in light of yesterday's PR and the fact that she's working really hard today to hit a new PR (she threw up 5 times by 9:00am), AND the fact that her weight has dropped from 9.17kg to 9.08kg (or for normal people, she lost about an ounce), I'll be REEEEEALLLY surprised if we get to go home today. Which will be awesome since our new roommate is on isolation for fevers, vomiting & diarrhea of unknown cause AND either she or her mom keeps doing that thing where they suck snot down their throat really loud and I want to gag every time I hear it. I may actually go crazy.
Oh, and to top it off, when I asked the nurse why they had put a non-contact patient in with my healthy baby, they said it was a bed availability issue and not to worry because they're both in diapers so there's very little chance of transfer. Um, HELLO! We're in the same friggin' hospital room and we use the same garbage can & linen hamper and touch the same door handles! Oh, but the real kicker is that 5 minutes after I asked about that, she came back in all suited up with the gloves & gown they use for isolation patients and said that because of the strange smell of Raya's last poopy diaper, they had decided to test her for c. diff so now she's on isolation too until the lab result comes back. AAAAHHHHHHH. I think they're trying to kill me.


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 …