Momma Bear Got to Roar by Konnie Enos

I’m sure any good mother would be protective of their children when the need arises. When you have children who are disabled in any way that protectiveness goes into overdrive. I should know. I’m the mother of five wonderful children and they all have their individual trials, including one on the Autism spectrum (high functioning) and two with health challenges, one of those major ones.

With her long list of diseases and conditions she has faulty collagen, loose joints, and issues with her heart, and her digestive track not functioning as it should. All thanks to EDS, Mast cell disease, Lupus and Gastroparesis. And those are just the major highlights of her list.

Over the last eight months she’s been in and out of hospitals and going from one doctor to another. Sometimes as much as four in one week.

This last month has been more of a nightmare. She’s been to the ER every single week, as much as a couple of times. Then the week before Spring Break she went back to the ER and they admitted her.

Things went well the first couple of days. They seemed to listen to her about her reactions to medicines and then they determined her issues seemed to require surgery.

Things went downhill from there.

The surgery was on Sunday. By Wednesday they had not given her any nourishment of any kind and were concerned that her blood sugar was so low.

NO DUH! You aren’t feeding her!

Then four, yes FOUR doctors invaded her room and made every effort to brow beat her into submitting to their treatment plan and when that wasn’t working one of them took me out of the room and suggested she needed a psychiatric evaluation.

I not only told him in no uncertain terms my daughter was of sound mind, but I also told him he was NOT paying any attention to the fact she had Mast cell disease. She AMA’d (she signed out of the hospital Against Medical Advise) shortly after that.

As she left one of the doctor’s, expressing that he thought she was making the wrong choice said, “I hope we don’t see you back here anytime soon.”

By Friday it became clear, from the pain she would have to return to a hospital, but she refused to go back to the one she’d just left. So we found another one. (Thankfully this is big city and it was easy to do.)

I can say this much for the staff at this hospital. They were very thorough in running tests to figure out what the problem was and seemed to listen to her about her reactions. One of those tests required her to go under anesthesia again. Thankfully it also helped them find and fix the problem.

The problems arose after that.

As they were preparing her for that test, she said she was feeling nauseous. After the procedure she started throwing up.

Every doctor and nurse we came into contact with the rest of that day insisted it was because she’d been under anesthesia totally ignoring the fact the nausea started BEFORE they took her in to do the procedure.

I had gone home to get some sleep but my dear daughter called me back with a text. She was still throwing up.

I had to find the nurse and tell her to disconnect the medicines being pumped into her by IV.

She hasn’t thrown up since.

She spent the next day refusing all treatment.

The doctors and nurses repeatedly told her it was her choice while also stressing she would die if she didn’t continue treatment.

While my husband and I were visiting with her one of the doctors came in and tried to get her to submit to their treatment plan.  

According to my husband I was rather thorough in chewing him out when I told him the failings of his plan.

I know I told him she couldn’t move and was throwing up while they were pumping all that medicine into her and she only started getting better when she stopped all of it. I also again, reminded him, she has Mast cell disease.
All I could think was that when the patient it reduced to a nearly vegetative state and is lying there repeatedly throwing up when they have had zero nourishment in over twenty-four hours THERE IS SOMETHING WRONG! When all of that slowly subsides when the patient STOPS ALL medicines, THEN one can conclude continuing treatment IS NOT the best plan for the patient.

Yes, I went a little Mamma Bear on him.

And yes, I helped her AMA right out of there.

Yes, she has been improving daily since then.

Sometimes you gotta do what you gotta do.

Smile. Make the day a brighter day.

Also Posted on my daughter's, May Enos' blog, Price of Genetics (it will be up at 9 a.m. April 18th).