Thu, 23 Mar 2017 22:59:49 +0000
I’ve written before that my 12 year old was diagnosed with Type 1 Diabetes 3 years ago. It was a tough blow for the entire family. Up until about 7 months ago, we were able to keep her glucose numbers somewhat under control. But as her hormones took over, it became harder and harder. Still we managed to keep her out of the hospital and out of DKA.
Diabetic ketoacidosis (DKA) is a serious complication of diabetes that occurs when your body produces high levels of blood acids called ketones. The condition develops when your body can’t produce enough insulin.
In December, she went into DKA. She was suffering from a stomach virus, and we couldn’t keep her glucose low, nor could she keep any fluids in. We ended up taking her to the hospital and one of the first things the on call endocrinologist said to me was “Well how did you let this happen?”. I was kind of shocked. I tried to explain that we weren’t sure what happened and that she was sick. Then she proceeded to tell me (while the ER staff was sticking and poking my daughter) that “if this happened again that I would be reported to CPS”. Yes, this was the bedside manner I received at a hospital who strives to take care of children. When she said that I immediately stopped talking to her. She had an attending with her, and I only spoke to him for the rest of the evening.
We ended up staying two nights. Before discharge, I was forced to sit with a representative from the endo clinic to “educate me” on taking care of my child. It was fine, I was respectful and listened. It wasn’t until after I explained ALL that I do for my child that this person apologized that she even had to come talk to me. She commended me on my relationship with the school nurse. She was shocked that I gave emergency kits to ALL of my daughter’s teachers and the front office. She was in awe at my 4 page 504 plan I created with the school. She took notes FROM me on the apps I used to count carbs and track my daughter’s glucose. But leaving that hospital put me in a real low.
It didn’t help that the next month she got the flu, and that threw her into DKA once again. Except this time it was different. I usually rush my kids to the ER when I know they need to go. I don’t hesitate. But this time, I hesitated. I knew my daughter was in a life threatening situation and for a very brief second, I hesitated. I texted my mom and wrote “But what if they try to take her away from us”. That was a legit feeling in my gut. I was scared as hell! I heard horror stories of kids that were taken from their parents for not having their diabetes in control. And these weren’t negligent parents.
I took her to the ER, and thank goodness I wasn’t reprimanded this time. I was still on edge the entire time. I was waiting for CPS to come into the room at any minute. I started having anxiety attacks. It was just too much.
Only a month later, we ended BACK in the ER. This time I was completely thrown for a loop. I didn’t know what the hell threw her into DKA. I started getting heart palpatations. We ended up in the ICU this time.
The following week we met with her regular nurse practitioner to discuss everything. Sure this team effort would help us get to the bottom of it all. But the nurse practitioner was very “judgy”. I explained that the first 2 times, my daughter had the flu. To which she said “I know tons of T1Ds who have the flu and don’t go into DKA!”.
I checked out at that point. I listened to her talk condescendingly to me. When I had the floor, I explained to her that she was out of line and unprofessional. She was blaming me for things that were out of control. I explained that we had pinpointed a few things that send her glucose into crazy numbers, like artificial sweeteners. But this is ALL through trial and error. But this woman now had an attitude because I didn’t sit there and let her belittle me. At this point, she then tries to change my daughter insulin regime based on TWO days worth of data. My daughter had high numbers for the last 3 weeks but she wanted to change numbers based on 2 days. I finally told her that I knew she was upset and that we weren’t meshing, but I’ll be damned if you alter my daughters insulin regime because you have an attitude! It was a bad meeting, so much more happened. I made sure to schedule my next appointment with anyone BUT her.
I’ve heard other moms say that after their child’s diagnosis, the parent suffered from PTSD. And I think I finally see the commonality. I’ve mentioned it before, but it’s SO nerve wrecking to worry about your child as they sleep at night. There are nights where my child’s glucose slips into the 40s. She could easily go into a coma. Mornings I go in her room to check to make sure she is still breathing. And to top it all off, my daughter is starting to cry because of everything that entails this awful disease. Today she had to have a friend walk with her home because she was low, and wasn’t sure she would make it to the house with out passing out. Neither had their phone.
I’m. Trying. To. Keep. It. Together.
Job 11:18 (GNT) You will live secure and full of hope; God will protect you and give you rest.