Baby Steps

Tuesday, April 8, 2014

A day in the life of a special needs parent

I am writing this post mostly to vent but also to give you a glimpse into our visit at the hospital. 

We recently did a routine EEG at Denver Children's hospital. This was something we requested to look for changes in seizure activity and to have new baseline data. We have done this at least 10 times now and I can honestly say this overnight visit in the hospital was the worst. I pray Piper never gets sick because I never want to be admitted here again. 

Just a few of the conversations I had during our stay....

Me (7:30am at the hospital registration): Good morning, we are here to check in for our EEG. 
Receptionist: Great! Thanks for getting here on time. 
(5 min check in)
Receptionist: If you will just have a seat over there it should be about an hour before we will have a room ready. 
Me: So, why did we get here this early? We could have been 45 min late and still had plenty of time?
Receptionist: Yes

Physicians assistant (in the middle of Piper getting leads put on her head and screaming at the top of her lungs) : I would like to review Piper's medical history with you. 
Me: Do you have her medical records from TN that contain her entire history? 
P.A.: Yes, I do, but I would like to hear them from your mouth.
Me: Alright then, but you are going to have to speak a little louder. 

Me: I would like to order lunch for my daughter. She is on a gluten free low sugar diet, so I need green beans, pears and a sweet potato. 
Lunch lady: Oh,I'm sorry those items are too dangerous for her to eat, they aren't classified as soft. The skin on the sweet potato could be a choking hazard. 
Me: I think you can remove the skin. I've actually done it before. 
Lunch lady: Ok, we can TRY. I will have to send other items in place of the two other choices that Piper can handle. 

Here is what she sent 

Me to our night RN: Piper has startle seizures so if we could avoid any interruptions during the time she is sleeping that would be great. She is not sick so there is no need to weigh diapers, check vitals as often etc. How about I buzz you if she has a seizure and otherwise don't interrupt her sleeping. 
RN: ok, sounds good. 
(20 min later after Piper has fallen asleep)
RN: Just checking in on you, I need to know what Piper has eaten today. (Wakes Piper up, triggers seizure)
Me: speechless 

Night RN: If Piper has a seizure lasting over 5 minutes it's our protocol to give rescue medicine. 
me: We don't use that protocol at home and do not feel comfortable giving her rescue meds. Every cluster she has lasts over 5 minutes. According to your protocol she would have been given rescue meds 4 times since we have been here. Did you speak with the day nurse before she left?
RN: Yes, I did and she told me the exact same thing you did. 
Me: So what's the problem?
RN: It's our protocol to administer rescue meds after 5 min. 
me: Looks Like the day nurse and Neurologist didn't follow protocol. 
RN: Oh, I guess you are right. 

Night RN: Piper gets her medicine at 9pm. You are welcome to give her CBD oil because we do not supply that but we can't let you give her fish oil or melatonin supplements. 
me: What? Why?
RN: We have to use our own meds but do not have liquid fish oil.
Me: You just said I can give CBD oil since you don't have it on hand. It's the same situation. Why can't I give her melatonin?
RN: She has to take the pill provided by the hospital. 
Me: She can't swallow a pill. We have to use our powder. Please send your supervisor in so I can talk to them about this situation. 
(30 min later)
RN: You are welcome to give her anything you want. 

Let me add that after all of this she still brought one of Piper's meds in at 9pm. Piper gets 2ml of this med. I threw it in trash and made my own. The wrong dose, seriously??!

Night Nurse: If Piper has a seizure tonight please push the red marker button. 
Me: We have been here for 12 hours and I have already pushed this button many times. She may have seizures I don't hear if I'm sleeping so will the people monitoring the video catch them?
Nurse: You are planning on sleeping?

Day nurse: You have to be in the room with Piper at all times.
Me: No problem
Nurse: That means all day and night, you can't go home to sleep. 
Me: What?? This isn't where I drop my child off for overnight day care??!! Crap, I was looking forward to a relaxing night with my husband. (Ok, I only thought this one but sure did want to say it) 

(After all my attempts to prevent interruptions and startle seizures during the night, the nurse came in at 4am to take her temperature. She was startled, woke up and had a cluster. She was unable to go back to sleep and screamed for two hours. The only thing that calmed her down was getting in the bed with her. Nurse comes in at 6am while I am snuggled up with her in the bed) 

Nurse: What's wrong with Piper?
Me: You woke her up at 4, triggered a seizure and she couldn't get back to sleep.
Nurse: Oh, poor thing! 
Me:You couldn't hear the screaming?
Nurse: I sure did, poor baby! By the way, you can't get in he bed with her, it's protocol. 
Me: I thought we agreed our protocol was no interruptions. Looks like we both are in trouble. 

Me to nurse: Two of Piper's leads have fallen off and I am afraid it will affect the results of the study. 
Nurse: I don't think they are that important. 
Me: You don't think the things that are measuring seizure activity are important to the seizure study we are doing??
Nurse: I'll try to find someone to fix it but no promises. 
Me: I think it's time for use to go home. 



  1. Oh that is awful! We have always had such great nurses and Dr's at Children's when we have been there. So sad to hear that you all had such a poor experience. I hope that you are going to bring this to the attention of those in charge.

  2. thanks for sharing, it seems like thats our issues every time my daughter is inpatient. and its always something. :( thoughts and prayers to u. <3

  3. Oh. I don't even know what to say. I am so sorry. Piper is so lucky to have parents who are tireless advocates for her. I think about you and Piper often! I hope the results of the study at least helped in some way?

    I love your attitude. I know there is nothing funny about this situation, but when you put the picture of the Fruit Roll-up and string cheese...I laughed a little. Your attitude is such an inspiration!

  4. Ugh! When they give/or mail you that survey your suppose to fill out just attach this documentation to it. Make sure you are getting names also. I am so sorry. Is there another hospital you can take her to?? Also let the Nuero know of your experience there.

  5. That's CRAZY!! What floor is she on? We've never had that kind of experience in 3 years of being admitted collectively a good 8 months in the last 3 years. Geesh. No why in the hell would they give her a fruit roll up?? They've lost me there. We've never been in a sleep study room overnight but they rest of the floors are fantastic. Thankfully you don't have to do 24 EEG's too often. Neuro's Dr. Julie Parson's and Dr. Tim Bernard were both tied for #1 in the country for children's neuro so I wouldn't leave the hospital if it's possible.

  6. OMG. This is the "we are a foreign country but don't know it" problem that some hospitals have. That is crazy. I hope you copy all of this into a letter to the head of patient services. They really think they are the bee's knees at DCH, so they need this feedback. Sorry that Piper is struggling so. xoxoxox.

  7. I have to tell you that as an RN reading your post made me both very angry and very glad that Piper is blessed with you to be her advocate. I think that you should insist on a meeting with the head nurse for the floor she was on and the nursing administrator for the hospital. They need to read exactly what you wrote and hear your story. Not so much to get those particular individuals in trouble but to let them know that they have real issues in educating staff on patient/family centered care. Your post should be required reading in staff meetings and new employee orientation--for everyone from registration to dietary to nursing--the small things employess do, or fail to do, have a huge impact on patients and their family . Elaine Edwards BSN, RN--otherwise known as Andrew's Mom

  8. Annie, I'm fuming!! I somehow missed reading this;/ what the...

    So glad Piper and Evan have you to watch over them. They've been blessed with the best mom ever!