**I just want to say up front that I have a lot of respect for those in the medical profession. I get grossed out and freaked out pretty easily so I could never see myself working in that field. Jesse has been under the care of many great doctors and nurses and hospitals over the years… however this visit, like most of our emergency room visits, was not a great experience!
This intestinal blockage started out the same way all of Jesse’s previous blockages start. In hindsight he always wishes he had stopped eating sooner, but he always feels like the first couple of cramps are nothing to worry about. A few hours and a few more meals later, he is in a lot of pain and it gets pretty clear that a trip to the hospital is in our future. We don’t go in immediately because the hospital staff is never concerned until a significant amount of time has passed and the department that finally treats him isn’t usually available overnight. Also, it doesn’t do much good to get there right before the nurses change shifts because nothing happens until the new nurse comes in.
Like I have in the past, I went to bed early knowing that it would be a short night. I didn’t sleep very well because I kept thinking Jesse would be waking me up at any moment. He finally woke up around 4:30 and told me he was ready to go. I jumped up, got dressed, and ate a quick breakfast. I’ve learned to plan on being gone for an entire day so I packed the laptop, a book, an extra sweatshirt, lunch, and lots of snacks to last the entire day.
We were initially encouraged that the triage nurse had ALL of his information in the computer already. This never happens! Unfortunately, our luck ran out after that. Like always it took hours before they were even able to give him some pain medication. After repeating Jesse’s entire history to several nurses and a medical student, the resident finally comes in and says he’s going to start talking to a surgeon about treating the blockage! This is where our patience ran out… why don’t any of the medical staff communicate with each other? Why doesn’t the doctor even glace at his chart before coming into the room? After hours and hours of waiting the doctors we were seeing didn’t even know that he had cystic fibrosis.
We insisted that we would not be considering surgery and that they should give Jesse the same and only course of treatment that always works. I realize that the medical staff has to follow their procedures, but it is so frustrating the way they talk down to you and over you. Especially in a case where the patient has a chronic and rare illness. I’m 100% sure that Jesse knows more about his CF than the doctors he sees in the emergency room. The first time I had to take Jesse to the hospital I remember telling him that he needed to be nicer the nurses, I’ve since learned that if we aren’t somewhat forceful they will do treatments that we know are incorrect for him.
After about seven hours in the emergency room, they finally took him to radiology to do the procedure. At this time the nurse thought it would be a good time to move Jesse from his room into the hallway. I protested saying he is always supposed to have an isolated room (he’s cultured MRSA in the past so this is usually not a problem). They must have somewhat known this because they had a special sign on his door telling the staff to wear gowns, gloves, and masks when entering his room (which they were ignoring). I was kicked out of the room anyways because they were too busy to waste a room while he was gone. When he came back we took our own precautions by having him wear a mask in the hallway… too many yucky germs in the hospital.
After not being treated in radiology after all, the emergency room nurses began preparing and figuring out how to the treatment (super-enema) themselves. I got a little concerned because they looked like they were getting ready to do it right there in the middle of the hallway. Jesse was in so much pain by this time that he really didn’t care where they did it. When I confirmed with the nurse that he should be put in a room for this she looked at me like I was a complete idiot and said that he would obviously have a room. What the heck? They were getting it all set up!
When it was all said and done we had been there over twelve hours for a one minute procedure. I was super tired from being up all night and cranky from sitting in uncomfortable hospital chairs all day. I was getting hungry because it was now past dinner time and I had eaten all of my allergy-free snacks. It is so exhausting to argue with medical staff all day long. It makes me really worry what might happen if one of us is ever there unconscious with out someone to make sure they aren’t overlooking important details. I’m just glad Jesse was still able to come home that night without an unnecessary surgery or anything else that could have gone wrong.
