Skip to main content

She said her 2nd word

Okay, so this morning Raya's super-cute tech was doing her vitals and I SWEAR (and 2 nurses & a tech will agree) that Raya said, "Blood pressure!" while pointing to the blood pressure cuff on her leg. No joke, she totally said it. She is a smart girl.

She is definitely making progress. The last 2 days, when she throws up first thing in the morning it's just clear fluid coming out (i.e. whatever saliva she's swallowed) so that's a very VERY good thing. Up until yesterday, every time she threw up it was large amounts of bile in various colors and was quite disgusting. I can handle saliva & dry heaving, which there's still a lot of. This morning she only threw up twice which was a huge improvement from the rest of the time we've been here. Most of the other mornings she's thrown up 5 times before 9:00 and this weekend it was 4-5 times before 7:00 so today was pretty exciting for me.

She's starting on a new medication to try & increase her motility and hopefully decrease the dry heaving and hopefully we'll see better results from this one than the others we've tried. She'll be having an upper GI sometime in the next hour to see if for some reason her J tube is obstructing her stomach from emptying. If it is, that's a problem and they'll have to take her back to IR (interventional radiology) and have them try to reposition it. I'm crossing my fingers that we don't have to do that because it was difficult enough to get it in the first time.
Her weight was down to 9.095kg today which is about 20 lbs 1 oz, so pretty much she's lost about half a pound since she's been here. That's not good but I don't know how or if that will impact us being able to leave. Tomorrow they'll check her electrolyte levels to see if we're doing sufficient replacement for what she loses when we drain her stomach and then it will just be a matter of how long they want to monitor her to make sure we're on the right track.

Comments

  1. So, you put a child in a "cage" and she is in the same environment for 10 or more days, hearing the same vocabulary, and she just might start saying many other hospital terms--she knows more that they think! It looks like things are going better for her-hope she goes home this week!
    Love, Auntie Debra

    ReplyDelete
  2. Glad to hear things are improving somewhat. It will be a relief when she gets to go home again, I am sure. Your family needs to be together again after this long away.

    ReplyDelete
  3. Hey, I have been thinking about you and the fam. Sorry that you r back in the hospital. Trust me about the sickness you get from hospitals. Alyssa got one right after her 1st surgery and we ended up staying up to 6 weeks afterwards to make sure we were clear of it. So I really feel for you. I hope you can get to go home soon. Nothing like being home with the whole fam makes things a lot better. You are doing a awesome job and yes you r allowed to go crazy, and complain as much as you want. I am still amazed at how well you handle all of this. Good luck!!! and we r praying for you guys.

    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 …