This morning was the first Saturday morning in quite a while that we didn't have to be up, ready, and out the door by 8:45am because of baseball. Regardless, BubTar was up at 6:30am because he wanted to start reading the new Wimpy Kid book he picked up last night. KayTar woke up about 7am and called down to us, still snug in our bed, and we directed her to go read in her brother's room with him. She did and we stayed cozy in bed, though not quite asleep anymore. About thirty minutes later, KayTar started calling me. She had come down to the living room, asking me to get her chicken nuggets from the kitchen...which is NOT that far from the living room. I said, "Can't you just get them?" She said, "I'm trying, but my legs are too wobbly!" I was up in a FLASH. Wobbly legs is one of her chief complaints when she is hypoglycemic, and she has been feverish since yesterday morning...making hypoglycemia a definite possibility.
I checked her glucose and it was 47. Then I felt like a real jerk for lazing around in bed like I had, especially when she said, "Well, I slid myself down the stairs because my legs wouldn't work and I was trying to drag myself to the kitchen, but I just couldn't." We ran in 2 ounces of Pedialyte and rechecked her glucose in 15 minutes (in the interim, I rushed to get ready in case we were going to have to go to the hospital), it went up to 60. We repeated the Pedialyte and glucose checks every 15 minutes until she'd had a whole 8 ounces plus a tablespoon of cornstarch. Luckily, she tolerated it well without any vomiting. After that, her glucose was back up to the 90's. Whew. There are few things that can instantly shake me from a sleepy stupor without the aid of caffeine, but this is definitely one of them. I don't recommend it, though, just stick to coffee.
The rest of the day has gone pretty well with 4 ounce feeds of Pediasure, but she vomited up her most recent feed which was a 6 ouncer. I'm not sure what we will be able to get in her before bed...and I don't know how her numbers will be in the morning. Wish us luck!
3 comments:
Kyla,
Does KayTar's tube feed directly into her stomach or her jejunum?If her stomach, why? Perhaps, she would do better if the tube went into her jejunum! Just a thought.
I have a 14 French; tube that goes into the jejunum and a pacemaker that sits in a pocket in the abdominal area and the leads are attached to the pylorus.
My feeds are 20-24 hours a day. My day rates are slow (30 cc per hour) and at bedtime (40 cc per hour). Currently, I am on Vivonex RTF. My out of state GI doctor would rather me use Vivonex TEN but it requires a blender and once you make it, it's only good for 24 hours and it was a PITA. It is the only formula he will allow patients with idiopatheic gastroparesis use.
Sometimes I dilute the formula with water if I am not feeling well (70 W /30 F). Something is better than nothing as far as I am concerned.
Most of my meds go through the tube, some I give myself IM or SC and one gets rubbed into the wrists (phenergan). I may end up with a PORT by year's end.
Hope you have less excitement tomorrow.
If I can get a picture of my CT scan I will send it to KayTar to see. I think she will find the tube and the pacemaker cool to look at.
How are you feeling? I know you mentioned having bronchitis a week or so ago. I hated being "the one" that coughs for the entire 3 hour class. And with the severity of my asthma and the fact that I get some kind of illness with COUGH every 6 weeks from September-May. And the cough I get, OMG!
Take care,
Jodi
Jeez! I'll take my coffee, thanks. I think about all the little somatic complaints I blow off from my kids and how different it would be if I was living in your shoes!
I admire all that you do in just your day-to-day life. You're amazing.
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