To give an insulin shot correctly?!?! Good gosh. This morning it took 3 nurses in the ICU to figure out the correct dose. I just stood there trying to help out, but of course, they had to figure it out themselves. Then they passed it to each other to double check...all ready to give it to my daughter...when I asked to quadruple check it. Only to find out it was an incorrect dose. DILUTED INSULIN PEOPLE! It means if it is 1/2 a unit of Humalog, it is 1 unit on the syringe. So, after that I ended up using my own syringe and doing the injection myself. RIDICULOUS. And this is the ICU.
If you can't tell, I'm officially over being worried, exhausted, and overwhelmed. Now I'm just annoyed. I swear if I hear one more time "wow, she's very medically fragile...this is such a balancing act...this is very complex..." I might hurt someone. We already know that. But thanks Captain Obviouses.
We were sent away from the ICU this evening. Not to our beautifully new 4th floor Pavilion with all our favorite nurses who are so wonderful with seizure kiddos...and neurotic mothers...but to floor 4 in the main hospital. A dark, gloomy place. With narrow hallways and tons of people. The nurses there are apparently "much better with Diabetics." But when I was leaving this evening and said goodbye to our nurse, she told me not to worry. "The Dr.'s just want us to get the formula down Kendall so it will help with her seizures." That's when I knew this hall doesn't know a whole heck of a lot about seizures or the Ketogenic Diet. OR MY DAUGHTER. We lost her pacifier when we were transferred from the ICU, and as the nurse was trying to get Kendall to suck on the hospital passy she offered to dip it in the sweet stuff...again...not much knowledge of the diet. UGH!!!!
So Justin is with her tonight. I know he can handle double checking the nurses. So I will get some rest and do it all over again tomorrow. Last night was bad for me. I absolutely hate the ICU. Its a big fish bowl and you hear way more than you should. I awoke last night to very disturbing emergencies. And the sweet 6 year old's future will be determined tomorrow. I will never know how it turns out...and that's probably for the best.
We are looking at staying through the weekend. That will total over 2 weeks for us. Poor Justin was suppose to go hunting this weekend and now it doesn't look like he'll be able to. I feel bad for him since he was so looking forward to it. But I guess that's life. Well, our life.
Kendall is receiving OT and PT in the hospital. The ladies who have been to see her so far have been great. AND....we were able to get bilateral AFO's ordered for her. So we will be able to cast at our bedside and pick them up later. At least I will be able to cross one thing off my list this week!!!
I really want to get her home and eating solid foods again. This G button was only suppose to be for supplemental fluid and medication. Not 36 oz a day.
Thanks again for all your support. Kendall is on the mend, but we still have a way to go before the permanent plan will be put in action. If I don't have a good feeling about things tomorrow I think I'm going to request a care conference. We seem to be getting different answers from everyone involved and its becoming more evident that not everyone is on the same page. That makes it impossible for us to go home feeling confident we are doing what is best for Kendall. So I don't care who's toes I step on in the process. If I didn't completely believe it before, I do now. Justin and I know Kendall and her issues better than anyone else.
Good night. Tomorrow's a new day.
Tapestry of Grace, Year Four, Unit One
6 hours ago