The Patient/Family Side

I get to experience the healthcare provider part of the hospital all the time, but having Addison in the hospital the past few days has really got me thinking about the patient and family experience of being hospitalized. We have mostly had fabulous nurses. I could tell that they truly cared and they did everything they could to help make our stay more comfortable. We also had a couple not so great nurses. There was one who didn’t even acknowledge me the first time she came in the room after I arrived for the day. There was another who assured me that she was “keeping an eye” on Addison’s monitor from the nurse’s station, but didn’t set foot in the room for two hours to actually check on Addison when her heart rate was low after being sedated for an MRI. When I mentioned Addison’s NG tube needed retaped since they don’t usually change them in the hospital unless they get pulled out, she promptly informed me that there was tape over on the counter and left the room. Now, I am more than capable of retaping and repositioning her NG since I do it ALL THE TIME at home, and have for the past 3 months. But, I was utterly exhausted and it would have been nice to not have to fight my 14 month old to get her NG positioned properly and taped well. I would have at least appreciated an offer of help. I guess the point is, it is so very important to consider what our patients and families might be going through. It especially important when you work with children. (Also with adults, but it’s a bit different). For example, let me tell you a little about the last few days. Thursday morning, Addison had PT and OT. We were home for a couple of hours, and then I brought her to Akron for her EEG. Friday morning at 9:30 am, I got a phone call from her neurologist telling me to bring her to the hospital to be admitted because of what they saw on her EEG. I had just finished feeding Violet and Oriana and was in the middle of eating my (super gourmet) breakfast of cereal. I then spent the next 30 minutes on the phone, calling Ryan and trying to find someone to watch Violet and Oriana, while running around attempting to pack bags for Addison and I and get dressed, and keeping an eye on the girls. We were at the hospital by noon, I spent the night Friday and spent all day and night Saturday with Addison. I went home Sunday afternoon so I could see Violet and Oriana for a few hours, shower, and attempt to get a few hours of sleep before working midnights. Monday morning, I got home from work and spent the morning with Violet and Oriana. I slept for an hour and a half while they napped. Then I packed them up and brought them with me to the hospital because Ryan was at the hospital with no car and we had no one else to watch the girls. So he took them home and I stayed with Addison until my Mom came to pick me up after work and took me home. I got to sleep in my own bed Monday night (which was wonderful, by the way). Then I was back at the hospital on Tuesday by 11:30 am and spent the rest of the day and night. Let me also mention that I spent a couple hours Saturday afternoon on my phone, calling and texting so many people to arrange for someone to watch Violet and Oriana Monday and Tuesday. I am tired. I am stressed. I am overwhelmed. I am missing my other children. I am missing my husband, because for the past five days, we have pretty much only seen in other in passing. I have slept in my own bed one night out of five. I am worried about my child. I am sick of hospital cafeteria food. My life doesn’t stop because my daughter is in the hospital. I still have to work and pay bills and make sure my family is taken care of. So if I’m a little snappy or unfriendly, I’m sorry. You aren’t really seeing me at my best. I’m trying my hardest and doing the best I can. But I am stretched about as far as I can go. So be just a little patient with me. Ask if I’d like to re-tape that tube or if I’d like you to do it. Remember that I am only human.


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Mommy to 4 little girls & 2 fur babies. Just trying to survive the crazy. Sometimes I laugh, sometimes I cry, sometimes I need to scream.

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