Skip to main content

Sleep study results

Normal. Gosh I hate that word. Raya's sleep study came back normal. She did have some periodic limb movements that woke her up, but not enough to fall into the range of periodic limb movement disorder. She also had some episodes of obstructive sleep apnea, but not enough to warrant CPAP. (I'm okay with that because getting her to sleep with a CPAP machine would not be fun.) She also snored all the way through it but not bad enough for anybody to think there's anything to address there either. Her sleep efficiency score was 94% (whatever the heck that means) so basically according to her sleep study, she's fine. UGH. Except for the part where she can't fall asleep without medication, and can't sleep through the night, and sometimes can't go back to sleep when she wakes up in the night. Like Wednesday night when I had 2 little girls wake up at about midnight and neither of them would go back to sleep until 3am (Raya) and goodness knows when Piper fell back to sleep. So yeah, not much helpful information came from the sleep study other than we've done it now and ruled out more stuff and found that the way things are right now might be as good as it gets.

In other news, we got back a stack of lab results from the neuro. There were some interesting things there, most of which I am not sure what to make of. One interesting and somewhat concerning find was that she did not develop antibodies in response to her pneumococcal vaccines. She got all the doses at the right times, but she only developed a fraction of the antibodies that she's supposed to have, so we need to follow up with immunology about that. It's possible that she just got a bad batch of vaccine (all 3 times???) but it's also possible that there's a problem with her immune system.

She had an endoscopy on Tuesday last week. Bless her heart, she handled it like a pro. These things are so much easier with her now that she is old enough and developmentally mature enough for me to explain them to her. It has been amazing to watch her develop a relationship with her GI doctor too and to have her doctor be able to tell her, "I need to look in your throat and stomach to see if we can figure out why you're having trouble swallowing," and for Raya to trust her enough to be okay with that. It also helped to not have it done at the main hospital because she has a lot more anxiety there than she does at the other location. She knows they won't poke her until she's already asleep, and she was pretty excited about the socks they gave her so she was in a very cooperative mood. We walked back to the endoscopy suite and she climbed up onto the table by herself, laid down, and helped hold the mask on her face. She was amazing and I was so proud of her. She gets emergence delirium coming out of anesthesia so the anesthesiologist gave her a good dose of something to help her sleep past the anesthesia drugs. It worked great but then she was mad when we got home and she found out she had slept through getting to drink the apple juice she had been promised.

Everything looked good in her throat except that the GI doctor said the scope made the tissue bleed more easily than it should have. She took biopsies and we will see what shows up. Of course I don't want anything to be wrong, but when there are obvious signs of a problem and we know there IS something wrong, it would be nice to be able to identify it. We should know in the next few days if anything was abnormal. They also did more labs that had been ordered by GI, allergy, and neuro. Poor girl woke up with needle pokes in several places because even with her well hydrated and under anesthesia, they couldn't get the IV in and couldn't get a good vein for labs without a few pokes.

The kids are off on fall break. For the most part, it's been fine but it has been so stinkin' hot that I haven't been able to send them outside to play much so it's just like being back on summer break. We are cooped up inside and it gets old really fast. Plus we've had so many appointments that we haven't had time to do anything fun. This week will be busy too but the weather is supposed to be much nicer so hopefully we'll get outside more. I love fall and I love October and I'm SOOOO glad that it's October now because that means the weather is finally going to cool down and all of the fun holidays are coming.


Popular Posts

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…

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…

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 …