Discussions By Condition: Medical Errors

Tragically misdiagnosed-Ehlers-Danlos Syndrome Vascular Type (IV) Continued

Posted In: Medical Errors 0 Replies
  • Posted By: Daves Mom
  • October 24, 2006
  • 06:33 AM

On June 21st (Saturday), they operated, the surgeon came out and said, "They found a lot of scar tissue around the colostomy, and a lot of adhesions". He had a look on his face of bewilderment. I asked, "What you never saw this before?" he said, "No, not in someone his age, in people that are older, yes". I said, "What does that mean?". He responded, "I don't know!". That's as far as he went to find out "WHY". (This is when my mother's intuition came flooding through me - I was filled with such dread, it was an unbelievable feeling). They brought him back to his room without the NG tube in. The nurse couldn't believe that, she went out to get the surgeon - he proceeded to put the tube down his nose, while he was awake. Two days after surgery (Sunday & Monday), he developed a fever at times it went to 102. They just gave him Tylenol. It was a whole another day, before they started giving him antibiotics. His surgeon said, "He has some infection, the bowel is tight, where we put it back together". He continued to have a lot of pain. On the 4th day (Tuesday), they gave him a suppository, he did have a small bowel movement. On the 5th (Wednesday) morning (at 5:30a.m.) liquid bowel movement coming out of the incision saturated the bandage - stool was running down his leg (he was covered). Dave was so panicked as was I. I tried to ease his fear - All he kept saying was, "Oh my God Mom! I'm gonna need more surgery". (Inside I was ready to explode emotionally). He also had incontinence of his bowels, from then on. The surgeon came in, said "It's a fistula, it will close on it's own". I said, "If it's leaking like this on the outside, isn't leaking on the inside?". He told me, "No, the bowel is close to the skin, it's not leaking inside". He just put a colostomy bag over the incision. (I was half relieved and half panicked). The surgeon never did one single test to rule out the possibility of the colon leaking inside. He also removed the NG tube, and said he could have some liquids (the day before there was reddish/brown liquid that filled the jar from the NG tube). That night he had projectile vomit. (I just had such a feeling that something just isn't right, my first thought was a perforation) but every time I would say "Something just isn't right"-the surgeon would say, "He's been through a lot, he had a lot of adhesions, it's going to take time". (I tried to believe him, he was the doctor) The surgeon's kept saying, "That's because he had some liquids, if the nausea continues we will give him a shot for that". On the 6th day (Thursday), he was still trying to walk. (David always listened to everything the Doctors said, he always trusted them, they were telling him, "you just have to walk, this will relieve you pain/relieve the gas." As sick as he was, he would walk till he couldn't anymore. He believed that by doing everything that they said, he would get better. But, these doctor's were "NEVER" listening to what he was saying to them!!!! As we were walking, we heard this large movement of gas (very loud and fast) that came right out filling the colostomy bag. He had to run to the bathroom. He was nauseated all the time after this. They gave he the shot for nausea, then the surgeon said, "All the pain he was continuing to have, was because he wasn't taking any pain medication". So, he ordered codeine, for pain. (this is now 6 days after surgery). I said to the nurse, "I want an x-ray or something, there is something wrong". Later that night they did one (Dave couldn't even stand to have a vertical x-ray done). The surgeon said, "It shows air in the colon, but a part of the small bowel is dilated-that's all", "I think he's getting better". I thought, "I was losing my mind". I was saying, "Something isn't right, he's having so much pain, he can hardly even walk". Every time, he would say, "No, he's doing good, it's going to take time, he's been through alot, he's had alot of adhesions" and so on. (I was so torn, I'm not a doctor, I'm only a mother, I kept pushing my feelings away, doubting myself). I happened to see his medical records, were his blood pressure had been increasing from the day before (Thursday morning 115/63 - elevated through Friday 151/96). I questioned the nurse about his pressure, she said, "Well, if he's in pain, that would elevate it. (I felt like, the surgeon, nurses and I were all on different pages- they weren't seeing what I was, so I thought I must be over reacting (a nervous mother-as I had been called in the past) they know what symptoms/problems to look for, they would see it). So, my son continued to get worse.

On the 7th (Friday) day, Dave was up almost the whole night. He vomited, nausea, couldn't get comfortable, restless and was in pain across the right side under his ribs, down the middle of his stomach, and pain radiated to his right shoulder blade area. I was putting hot compresses on his stomach, trying to give him some relief. The surgeon comes in, My first question was, "What did the Radiologist say about the x-rays", he said, "About the same as what I told you". Dave and I are telling him he's in pain, the shoulder blade, he says, "It's probably a muscle spasm, just rub it". He even said, "He's doing well, your getting better, you can even go outside today, your stomachs soft, just take some pain medication". With a half-smirk on his face, like Dave was exaggerating his pain. I told him, "He's having so much discomfort, I don't think he wants to go outside". "Is this normal?" He said, "He'll be fine!". He ordered another suppository because he had stop having bowel movements at 6:00 p.m. the night before. Then the nurse said, "Well maybe some of his friends can come up and see him", I just looked at her, "Like, are you crazy!", then I said, "Dave isn't in any condition to see his friends". She didn't have clue!!!

Then the surgeon came back about 1 hour later, and said, "He wanted to put a Pic Line (central line) in, for nutrients". That's all he said to me. I was really very uncomfortable now, with this whole situation. I definitely wanted to transfer him to the Philadelphia Children's Hospital, so at 11:30 am, Friday (before the Pic Line is placed). I called the pediatric surgeon that I had taken Dave to see. I told him, "Dave's in a lot of pain, the incision started leaking bowel movement (almost 3 days ago) he said, "That's not good".(my panic intensified, I was so confusion and doubted myself, what do I do). I told him he is restless, he can't get comfortable, he's been vomiting, he's nauseated, now they want to do a Pic Line. I want him transferred up there". He told me, "To let them do the Pic Line, it will only help him, if he is no better, then we would transfer him". Reluctantly, I listened to his advice, because he was all I had left and at the time, I trusted him.

The Pic Line was scheduled for 1:00 p.m., they gave Dave a shot of Valium. This was unbelievable, I had to hold his head up, as we went down stairs, he was so drugged. I thought he looked a little jaundiced (but I thought "No!!!, it's probably just my imagination, at this point I was shifting between pushing my feelings and thoughts down, to complete nervous breakdown) - because the surgeon and the nurses weren't acting like anything was wrong, and even telling me so. After, we got back around 2:00pm, he was sleeping. He had finished his IV fluids downstairs, the nurse still didn't have him hooked up to another bag. After, about 30 minutes my husband and I went downstairs for about 20-30 minutes (we needed to get a breath of air). We were going to grab something to eat, but (my intuition kept bothering me). I wanted to call up to see how Dave was, if he was still sleeping. The girl answered, she said, "Dave just rang for the nurse, but she is busy with someone else"(there was only one other patient on the whole floor). (It's about 3:00 or 3:15 p.m.). I said, "I'll be right up", when we walked into that room - He was sweating profusely, very pale/ gray/ jaundice looking - he seemed out of it, he had to go to the bathroom, so we took him. After about 15 minutes, we were walking back to the bed, the nurse finally came in. I said, "Look at his color, he's sweating profusely, something's really wrong". On the way back, Dave totally collapsed in my arms and was unconscious - I screamed for my husband, he had to grab him and carry him to the bed. The nurse ran out to call the surgeon - he only ordered blood work, that's all!!! He still wasn't hooked to an IV or the hyper-alimentation for the Pic Line. The nurse never gave him oxygen, or did any procedures for the obvious shock that he was in. I truly had a nervous breakdown (I lost my mind at that point-I couldn't function, I paced like a caged animal - I almost jumped out the window) - I thought my son had died, right before my eyes. But, in the back of my mind, my thought was, "She's getting a doctor for my son". My husband was with him, reviving him with a cold towel. (After Dave's death from his medical record: the nurse tried to write over the blood pressure numbers (when she finally took his pressure)-what was underneath was something like 90/40 - his temp: 95, pulse: 156, resp: 28 - no pulse oxygen numbers documented). His pressure had been running 150/96 before.


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