7th grade!

Shoot, maybe 8th actually. Judge not, that you be not judged. MAT. 7:1 So, I didn't actually know that LEGALLY, Kira had to be enrolled in school. Obviously, she is too severe to attend a school, but I have heard of this "Home Hospital Instruction" before. Kira receives regional services through Alta Regional, and each year at her IPP (Individualized Program Plan), it was brought up that she *could* do a home hospital type setting as school. I always took that as a *suggestion* (lol), but since I work with her, and she has a home nurse as well, I was like, "we're good!". It wasn't until I started working at a school, and I learned that I could get into legal trouble if she was not enrolled, that I understood more. It was a grueling process full of a lot of ball dropping on both ends (mine and the school district), BUT... drum roll..... she is now officially an enrolled student! They say 7th grade due to her age, but I think my friends' boys who were born in the same month as sis, are in 8th grade. What this entails is having a special ED Teacher come to our home once a week ( more/less hours/days are do-able), for one hour. She will have any type of positive stimuli that they can offer her and that she can tolerate without flying into crazy back to back seizure mode. Now, really knowing what this is and how wonderful it CAN be for her, I am kicking myself for not doing it from jump. But isn't that the way, we parents have a LOT of regrets, and no disrespect to non special needs kiddos parents, but I fully believe that we have the possibility to have SO many more, and boy, do I. However... here we are, she is enrolled, she will get extra lovins once a week, and I'm thrilled! QUESTION, you know how a lot of schools do 8th grade graduation.. would that be cheating if I let Sis attend graduation? HAHA I mean, really, she would have only been in school for a year. But, um, heck yes, she will be there.. cap, gown, balloons, mom blowing the tootin horn, etc. Pulling out ALLLLLLLL the stops!

Got sugar?

Apparently, Kira doesn't. Well, not as much as she should anyhow. Today is Wednesday. On Monday at 4 p.m., we went for her normal, monthly port flush. It's just a saline flush and a heparin lock to keep her port-a-cath line in her chest clear. Every now and again, we may do some labs if needed. At the appointment, the nurse asked me if I needed any labs? I said "nope". Then right beforehand, I changed my mind, because her urine has been smelling slightly off to me, so I said, "You know what, let's go ahead and get some." The next morning I get a call at 6:30 A.M. from a nurse telling me that I need to get Kira into the ER right now, and if I can't that I need to call 911. They said to get some sugar into her right now because her blood sugar is at a critical level of 30. My head was spinning.. we live in a LOT of different worlds, but blood sugar world is not one of them. I'm completely ignorant to it. I did what I was told while panicking of course. I put 3 heaping tablespoons of straight table sugar and water into her and off we went. When we arrived, her sugars were 151. The nurses at the desk told me they did not believe that the 30 was accurate. They said it was just too low, and she is now 151. I felt better. Then we go back and see the E.R. Dr. who also tells me it almost positively was NOT 30. He said, "30 is truly not conducive to life." So obviously at that point, I'm pretty convinced it was a lab error. Until we draw again. Now she shot back down to 44. The 30 was actually very accurate, and she was sitting at that for hours..days...weeks..months? We have NEVER had an issue with her blood sugars. Many times over, this girl has fasted for 3 days upon some pretty sickly pneumonia admissions. The food is held off because intubation could be a possibility and being vented and fed don't work well together. And if going 3 days without food (only I.V. fluids) don't alter her blood sugars, what the heck is doing it now? Everyone is stumped. We haven't changed her food or meds. She isn't sick (that I know of)...it's a mystery! Her Dr. is amazing and being so thorough! She is doing so many lab work ups on her, bringing other Dr.'s in, and experimenting with some things. Apparently hormones can mess with sugars, so she is doing a full hormone panel. Oh my gosh.. what if this is Kira's PMS?! Ooooooooh girl!! Okay, Kira Jean, you tell your ovaries, if hypoglycemia is going to be your PMS, then cramps and mood swings are off the table! No deal. Seriously though, I am pretty anxious to get the panels back. What a very confusing world this one is. She will shoot up in numbers when fed, or given glucose, but quickly drop, and drop low. So, the current sitch is this; We have been giving her a continuous drip feed since last night, and as long as food is being pumped into her, her numbers have remained stable. We were checking every hour, now we are checking every 2 hours. On a side note, and your kid (maybe you) will thank me for this one, "STAY AWAY FROM THE BLUE LANCETS!!!" I'm surprised my ladybug's thumb is still attached after that! Stick with the lilac ones, for SURE. *cringe* Moving on... So we turned the feeding off at 5 P.M., it is now 6 P.M. and we will check her at 7. Let's see what happens 2 hours off of food. Then turn the drip feed back on. Starting tomorrow morning, we are going to attempt to give her her normal breakfast, lunch and dinner, BUT with some additional corn starch in between. Apparently corn starch is a complex carb and will help keep blood sugar levels pretty stable for a few hours. No clue what will happen with all of this. Perhaps God thought I needed some additional "hands-on" experience before going into actual nursing school? I love hands on God, but please let me lick her sweat to gage her sugars or something, no needles.