When Kendall’s video EEG was rescheduled, I thought to myself… wow, this will be the best one yet. Kendall’s on more of a routine. Her seizures are more predictable. She’s adjusting to new surroundings so much better now than before. She’s off the Ketogenic Diet, so I won’t have to be so rigid with everything that touches her or that she eats. The hospital won’t have to worry about making that KetoCal (heating up the water always throws dietary for a loop.) We aren’t on diluted Humalog anymore, so the pharmacy won’t freak out. I brought her brand name Keppra, so all we will have to do is send that down to pharmacy to distribute, and remember to get it back when we leave. We will get a good reading on her brain activity. This is going to be an easy 24 hours.
One of these days I will learn not to be optimistic when it comes to anything Kendall related in the hospital.
I don’t feel like linking back to previous posts about her near death experiences because of changes in insulin due to hospital protocol, or her sugar drops into the teens in the middle of the night. Or the fact that we were discharged only to return a day later in DKA and spent a week in the ICU.
I try to take everything as a learning experience…and we have learned a lot in the hospital with Kendall. I have most importantly learned to check every.single.thing. the nurses give her. I watch her insulin doses very carefully. I bring all her feeds and medication so I’m prepared and not waiting on pharmacy or nursing staff.
I know my stuff when it comes to Kendall’s diabetes. I know how to work her pump. I know what to do. I know how to read her signs. I know how to go with my gut. Her hemoglobin A1C is evidence of that.
But guess what? Her insulin pump isn’t hospital approved. THE INSULIN PUMP WE STARTED AT THAT HOSPITAL isn’t hospital approved. Our Dr. is the head of the Endocrine Department. We love him. He has fought for us in the past. He makes the call on that rule. Despite multiple people pleading with him to allow us to take over her insulin while in the hospital for only 24 hours, his answer was a firm no.
We arrived at the hospital to have her leads placed at 10am. It wasn’t until after noon that the Diabetic Educator was called in by pharmacy to address switching out the pump. I was defeated, but agreed to do it. (hospital protocol can’t exactly be argued when your Dr. makes it!) At 6pm after I had already managed 2 insulin bolus doses and feeds on my own it was explained to me that the hospital insulin pump doesn’t go down to the rate ours does (.225). So now we were facing a night of sugar checks, the possibility of low lows, and a nursing staff that admitted they would be more comfortable if I was in charge of things. (I wasn’t at all comfortable using a pump I’ve never seen)
So after 11 hours of Kendall not sleeping and enduring the trauma associated with a child with sensory issues getting leads glued to her head and dried (as strangers hold her head straight) we were discontinuing her video EEG and going home. What a waste of time and money.
Fortunately, the Neuro on call agreed that Kendall could be discharged so we wouldn’t have to foot the bill. He happened to be eating dinner with our Neuro at the time who suggested we just wear the leads home and do an ambulatory EEG. So that’s what we did.
The EEG worked out thanks to our Neuro team. But once again, Kendall fell victim to the lack of communication between Neuro and Endocrine.
I totally understand that we needed to change out her pump. I get that it was hospital protocol. But when we found out it would be different insulin rates, and she would need to endure sugar checks through the night, that would have not given us a good EEG reading.
My whole thing is this: If hospital protocol is a priority, they also need to make it a priority to have a pump with a filled cartridge in a timely manner. In my opinion, 8 hours of doing it on my own in the hospital proves that we could have made it 14 more hours. But I’m just the mom.
Kendall has been a trooper through the whole ordeal. She squealed when we found out we were going home, and this morning when I told her we had to go back to turn it in and get her leads taken out, she started to cry.