It took 1 hour to draw his blood. My husband in between taking care of our son and trying to comfort me, found time to call my sister-in-law to come right away to help me. When she got there she went in to see Dave. She told the nurse that his breathing looked rapid and shallow, he was semi-conscious, in and out and he looked jaundice, she said, "He's fine, "He's only a little pale under his tan", that's all. He still wasn't hooked-up to an IV or Hyperal at this time (now it's between 4:30 & 5:30). She still hadn't gotten a doctor in there to examine him. My sister- in-law, was trying to snap me out it - she had given me at least 2 Xanax - she said, "YOU HAVE TO GET DAVE OUT OF HERE, RIGHT NOW!!!". After she said that, we ran for the phone - I called the Philadelphia Children's hospital, spoke to the same surgeon (I still cannot remember to this days what I said) but I made arrangements to have the Helicopter transport come pick-up Dave. The one thing I do remember was that he told me that I had to let the other surgeon know - because of protocol. The nurse got him on the phone, I said, "I'm transferring David to Children's Hospital, this just doesn't make sense, you've been telling me for three days now, that he was just fine, what the ***l is going on?" He said, "Obviously he's bleeding from somewhere". This is when I slammed the phone down. It's now about 6:00 p.m. I told the nurse, "I'm transferring him to Children's by chopper, to make whatever arrangements that she had to. I was half- functioning at this point. The nurse said, "Don't you want to wait 2 more hours to see what his blood count is then"? His blood count was already 9.2. "I told her to take another blood test, now"! We're still waiting for a doctor, to examine Dave. He was still vomiting.
Around 6:15 p.m., David passed out again, just trying to sit on the edge of the bed to urinate. My husband went crazy, yelling to "GET A FU#? DOCTOR IN HERE NOW, WHERE THE ***l IS THE DOCTOR????", the nurse went running for the surgeon on duty at the hospital, which took another half hour to 45 minutes for him to come to his room (7:00pm). As soon as he saw Dave, he yelled for, "BLOOD"!!, "STAT", "A SAP", - my son was dying this whole time. And the nurse did nothing!!!!!!!! The blood that was "STAT" wasn't given to David until almost 8:00 p.m., almost 1 hour later (his cross and type was documented). David didn't get the immediate emergency medical attention that he should of had, this whole time.
His surgeon finally decided to show up, at 7:55 p.m.(4 1/2 hrs, after Dave collapsed the first time). Just before the chopper arrived. The surgeon, "NEVER" said one word to us. We saw the Children's transport team, we never felt such relieve. Some one, who really knows, "What the ***l they are doing". When he got to Children's, they stabilized him - had complete sepsis throughout his body, the anterior of the sigmoid wall had opened entirely, they discovered, impressive hemoperitoneum, a very large subcapsular and interparanchymal hematoma on the liver, free air and collection of fluid, several units of clotted blood, throughout his peritoneum. There were 4 perforation of the small bowel, abscesses, blood clots. "Did all this just happen overnight?" "I don't think so"!!!!!.
The next morning they did surgery for 5 1/2 hours. (I have no idea why the choose to wait until morning to operate on him - it was now 4 days that the bowel had been leaking inside him). He pulled through, but what followed was 10 excruciatingly painful days, with something going wrong everyday - fluid developed in his body, then a chest tube to drain the right pleural effusion (lung) that developed, then an abscess on the liver (E-coli) had to be drained, raging fevers. (In a person without a connective tissue disorder - the extensive contamination of the peritoneum cavity from the small/large bowel leaking. This alone can produce clotting problems leading to bleeding, the amount of fragility of the small bowel/intra-abdominal structure would occur because of the amount of sepsis present. Infection can erode the blood vessels). With a connective tissue disorder, David was fighting a losing battle!!!! But, we never gave up hope..never.
As soon as I saw Dave he said to me, "Mom, I really need a vacation?", I told him as soon as he gets well....we would take him to Orlando.... for the best vacation ever. Then he told me, "The surgeon really screwed up on me Mom, didn't he?", "I hate him for not listening or believing me", "Why didn't he do something!". I made my son a promise that day, that I would take care of everything. He even asked me, "Mom, we are going to get a lawyer, aren't we"? I told him, "Don't worry about that now, I will make sure that all those Doctors, will never forget your face or mine, or what
they didn't do for you". You can believe that.....
I spoke with the chopper nurse, she said, "When we got your call, we had never received a call like that from a mother wanting her child transferred, it's usually from a doctor, "so we came right away". We were in a whirlwind, we had no idea what the ***l was happening to our son. My pediatrician had gotten back from his vacation, and called Children's ICU - that's when he told me, "That they think Dave has Ehlers-Danlos Syndrome". "WHAT!!! What the ***l is that?" - his words to me were.. "It's what the circus people have"... "What!!!!! I said"... he proceeded to tell me, "Where they can bend in a pretzel"... "David can't bend in a pretzel!!!"... An overwhelming feeling flooded my being, my soul, "They are looking at my son as a circus freak...this was the same day that a Geneticist was finally called in to examine him, all she did was really look/examine his obvious symptoms, and she know he had a connective tissue disorder called, Ehlers-Danlos Syndrome Vascular Type (IV).
It wasn't until Saturday, one week later and 2 days before Dave's death - that we were brought into a conference room - the geneticist and a doctor told us, "We think your son has Ehlers-Danlos Syndrome -Type IV". "If he survives he will be very limited - he would never be able to play sports, never have any rough physical contact". I asked, "How many people have this?" She said, "There is one other person that we know of". I was floored.. ...destroyed. Then she said, "At any time anything can happen,
because of the fragility of tissues, skin, blood vessels, organs". "Are you telling me, "That I will never walk out of here with Dave?" " I can't say, will have to wait and see, hope and pray". My husband had to leave the room. I sat there completely overwhelmed with emotion, a sword pushed into my heart. After, they "RIPPED" my heart out and destroyed our world, with their words. I knew I had to pull myself together, so my son couldn't read my face and see such torment - for he knew me so well. I made up my mind that, "No one", was to tell my son, that he had EDS Type-IV, he had enough to deal with, he didn't need anymore!!! They had already took so much from him, already. Plus, his dream/passion had always been to play hockey - to someday be an ice hockey player!!!!!!!!! "NO ONE, WAS TAKEN HIS DREAM AWAY FROM HIM, NO ONE!!!
On top of "ALL", that was wrong with him, from "Neglect and Stupidity", from the surgeon's and my local hospital - then they tell me, he has this genetic disorder that he had for 14 years, which "NONE" of these educated and experienced DOCTORS, ever diagnosed. There were documented medical articles published in Surgical and Pediatric Journal's from 1994, 1995 - 1 yr. prior to Dave - a 14 yr.old and a 15 yr.old who had a perforation of the sigmoid colon in Ehlers-Danlos Syndrome......there's no excuse.....for not keeping up with important medical information....that's part of their job....."The presence of a perforation in a young patient, without a predisposing factor such as neoplasm, diverticulitis, colitis, steroid use, or inflammatory bowel disease, "MANDATES THE CONSIDERATION OF EHLERS-DANLOS SYNDROME".
Also, surgical treatment of bowel perforation in EDS differs from that in most other patients because perforations tend to recur and anastomoses tend to breakdown. Surgery has to be done more meticulous, with no stress or tension put on internal organ. Restoration of bowel continuity is not recommended because of high incidence of recurrent perforations. Permanent colostomy, despite the young age of some patients, has been recommended. My son would still be alive! Can you imagine what it does to you, what it feels like; to have to watch helplessly as your child is suffering before your eyes, because Of "DOCTORS" that didn't do their "JOBS". To have your child that you love above "ANYTHING", and would give your life to save: ask you..."Mom!, am I going to die?????"
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