Be Your Child’s Advocate at Hospitals

Introduction:

I’m a mom with amazing son who was diagnosed with UC at the age of 11. Our story with the hopes of preventing the same thing happening to anyone else.

I am putting our son’s story out there has a warning to parents/anyone who has UC and seeks treatment. It’s is a bit lengthy but PLEASE READ.

My Son Was Treated Awfully Bad

Our son (12 years old now) was diagnosed last year with having Ulcerative Colitis.

Had a couple bouts with bloody stool 4 months apart. We made an appointment with a GI doctor at Nationwide Childrens Hospital, Columbus, Ohio. My son was seen and told that even though he was not having issues at the time that he possibly could have Crohn’s or UC.  And, that now that we were established we should just call if we ever saw blood again and they would scope him.

Well it did happen and we took our son to be scoped and was told he had pancolitis. That he looked like raw hamburger and started him on steroids..sent him home. Well things got worse so we called and voiced our concerns and took him back to the hospital where he was admitted. He did not respond to iv steroids but they did not try anything else. At this point he was getting worse, vomiting and losing more weight.

We were told that he was too bad to try any medicine but Remicade and that we were to never let a flare go and that they could not let it go beyond 6-7 days. So we decided to try Remicade hoping that we would find something else in future. It worked immediately…it was so great, but we knew that some build up an immunity after time so we started researching. Was very interested in things like Fecal Transplants but our doctors were not keen on listening to any of that. Didn’t know much about it etc.

Well 9 months later our son now 12 says to us on a Sunday I have a little blood in my stool and he was only 4 weeks out from his last Remicade. So on Monday I called and told them.  They said to watch to make sure it was not a bug. The problem with Childrens Hospital too is we always had to see this one that was a fellow then the doctor. Well, she said she would order blood-work.  So I drove our son to get bloodwork. Called about bloodwork found out Sed rate was elevated but they still wanted to wait. I knew to keep him hydrated and was pushing fluid and starting drinks like pedisure etc.

At this point he is starting to get worse. I call again and she tells me to get a stool sample from him and more blood-work. So I take him again and they tell me I have to have special containers to collect stool. So I get those and get the sample and drive up again the next day. Sediment rate up more and no other signs of anything. We are now getting to 4th of July weekend. I call a dr that I read about who had just done a study at Children’s hospital in Michigan to ask about fecal transplant study and tell him about our son. He told me to ask for the remicade antibody test. So I called and asked.  They tell me it cost too much and they don’t usually do that. I said I don’t care what it cost I would like to have it done. I also tell them my son is getting worse now throwing up and not eating…losing weight. They told me not to weigh him everyday(the fellow) but that too I could bring him to the ER but they wouldn’t do much more than I could do for him as it was a holiday weekend.

So long story short, he got worse and I took him to ER and they did xray and admitted him. They put him on IV fluids.

This time they did not try steriods or anything. I kept insisting on remicade antibody test and found out insurance would cover all of it.  Then they agreed to do it. It was overnighted. Our son is getting worse and worse…I keep asking about results being told they were not back yet and they just wanted to make sure he didn’t have a bug. I am like no this is a flare and I was told not to let a flare go more than 6-7 days and this has now been two weeks…he is down about 20-21 lbs and I am concerned he has not had any nutrition. They said if he can drink 4 cans of insure a day that will do it. Come on he is throwing up and putting blood out constantly. He is on the toilet more than in his bed in so much pain it killed us. My husband and I never let his sight his entire stay…sleeping in his rm. It was so awful….the residents would come in and poke him in belly asking if it hurt, then the fellow then the dr. It was pathetic. He was so miserable but not a complainer which made us feel even worse. The pain was so bad one time a resident asked if she could see his belly and he said could you please not push on it and she was clearly upset and shook the side of the bed and asked him if that hurt. We complained but nothing got done.

They start giving him morphine in the IV in the bathroom every 2 hrs and then Oxycodone. Well I noticed when they weighed him that he was starting to gain weight but nothing had changed as far as IV or eating…he was still eating nothing. Heart had been racing off and on. He was starting to take sodium on the tongue and I daily would ask about nutrition and they said if he can drink those 4 cans…I said he clearly hasn’t and can’t so I want some thing done.

They then asked a nephrologist to come in and he said why don’t they have him on TPN…I said what is that. He said total nutrician. So I asked about it and was told they would rather he get the nutrician through absorption in his stomach. I said he can’t then they NG tubed him. The next day I ask about why he is gaining wt and looking puffy…they had not even caught that. I asked for a belly measurement and that is when the ball started to roll, 9 days into hospital stay. Besides the weeks leading up that they didn’t want him to come in. A different Dr was on and she took one look and the next thing we know the ICU team is working on our son. Our son was whisked into surgery with a toxic mega colon. We were told by surgeon that has been operating 40 years he had seen one other and the patient came in that way. The doctor and anesthesiologist told us they would do their best but our son was very serious and may not make it.

He was in surgery a little over 4 hrs with his colon removed, the doctor left a little end piece for possible future J pouch. We were in ICU several days as he was on a vent. Left there too soon to go to surgery floor..rn tried to get them to let him stay. Ended up back having 5 drain tubes put in due to infection. The piece they left was leaking in to cavity from the top. Then he got a hospital infection pseudomonas. If things could go wrong they did.

We had some great nurses but we had a couple of nurse practitioners that were terrible. He was so heavily medicated with pain medicine that he started having some anxiety…not what I would call terrible due to everything he was going through. Being taken to xray so many times…..having dye put in and then having a reaction afterwards with a spiking fever. He would not kick scream or anything he would just cry if they said we are going to take you for this or that test. All we could think of is how much he had been through. I kept telling them that I was medicine sensitive and that might be it. They had him on TPN at this point. It come time to take one of the tubes out and he is scared and asks if they can give him something they tell him it will be nothing. At this the nurse practioner grabs it and pulls it out and he lets out a little yell and she rolls her eyes.

I wish you knew this child he is so laid back and compliant so it had to have felt bad. Then later it is time to start weening off TPN and I was told by one of the surgeons that it is hard to eat because the brain is being told it is full and it will take time. Well the nurse practioner said to him you are doing terrible at eating and you are going to be here alot longer until you eat. Which now he is upset with himself and tells us he is sorry he is trying. Mind you we had him up to eating 1500 calories at this time and I told her he doesn’t each too much more than that at home when he is active. I also reminded her of what the surgeon had told us and asked her if she had ever been on TPN. I am so upset thinking all the pain and suffering he has been through and he is sorry. Oh and after they took him off most pain meds most of the anxiety went away. Later too when they come to take the rectal tube out my husband asks that nurse practioner named Amy if she is going to give him anything and she said yes she want to make her job easier. Now I know no one has to take our word for it but it did happen and we are fortunate to have had many visitors that witnessed alot of this. At this point we are afraid to say too much as we don’t want it taken out on our son either. Needless to say 38 days later we come home with one drain tube left and our son excels in progress at home. We go back to get last tube out and the interventional radiologist takes it out carefully clamping it and pulling it slowly and I told her how the nurse practioner took it out and she said that had to hurt as there is a wire in there and you have to do it the way she showed me. Oh also they got mad when he said that the rectal tube hurt his leg when he walked and they nurse practioner said that it shouldn’t to get up and walk. Well we then looked at it as it was stiched to his leg and it was hanging the stitches were loose and it was laying up against the stitches away from leg. We had to ace bandage it. Also we had been begging to atleast try Humira to stop the flare and then we would work on where we would go from there knowing all along we would maybe come to the point of having the colon removed but knew we wanted him to be going into surgery electively and healthy as I have a nurse friend who had done it.

Anyway what our whole point is be a patient advocate…I know that we would not have our son today had I not asked for a measurement because I thought he looked bigger. We were very blessed to have stayed with him and watched for things. There is so much more that could be told but it is way to long now. We even went to the director of patient relations a month ago to tell her our story and said we didn’t want this happening to any other kids as we have researched and found numerous mistakes made and no kid should be treated by a nurse practioner that way. Our kid is easy going…can’t imagine no parent and a rough kid what happens.

We were told it would be investigated and we would receive a call in 2 wks along with a copy of his records with no charge. Leaving that office I said I know unfortunately how things work with a big well known named hospital, even a small one for that matter. Everyone tries to get their ducks in a row and talks to the story over to get it straight. Well after 4 wks I email and ask where they are. She calls and tells me about future plans with our son about next surgeries etc. I told her we knew all that and that they were avoiding the issues. She also now tells me that we can’t have a copy of our records u less we pay which would be over $500. I smell cover up. Needless to say we will not be going back to that Childrens. We are so disheartened by the morals and hospitals living on old reputations and money. I just pray this never happens to anyone else and please educate yourself and stand up yourself. I hope this wasn’t too much run on but it feels good just getting it out. We do not want anyone to have to go through what our son did, no one.

written by Worried Parent

submitted in the Parent’s Venting Area





18 Responses to “Be Your Child’s Advocate at Hospitals”

  1. BarbNovember 15, 2013 at 1:12 pm #

    So sorry you had to go through all of this. If I were you I would be calling the media and putting my story out there so another child doesn’t have to go through this and what were the results of the remicade antibody test? Did they ever give you the results?

    • CindyNovember 16, 2013 at 12:03 pm #

      Barb we kept being told they didn’t have results but we ended up calling the company that does the test and they said the results had been back. We asked that they fax them, we then had to tell the drs the results. He had built up antibodies. We kept asking to try Humara but were told we have to wait on various results from tests….minds you they had been running tests for weeks at this point and repeating. They finally gave his 4 doses of humara day before he ended up with emergency surgery. Guess what when he had went to he bathroom that night before the surgery….it was brown coming out and not bloody…but too late.

  2. Cecile
    aemiNovember 15, 2013 at 1:24 pm #

    i’m so sorry about all that, i barely cried. this is so unfair… i hope he’ll go through all this well and be a happy person. we should never forget that whatever happens, we should always aim at happiness…

    • CindyNovember 16, 2013 at 12:09 pm #

      Amei he is a wonderful child and takes it in stride and is dealing with the bag and all that comes with it. He even made the comment he hated that some of them thought he whined about tests being done and hopes they don’t think he was a complainer. He was not bad at all really. I do have to say we had some good nurses and they tried to be our advocates too but we’re not listened too. We now just hate he will have to at some point face 1-2 more surgeries even if he keep the illeostomy as they have to remove that little 4-6″ piece they left. My husband and I still have some sleepless nights and breakdown moments when we think about it. It especially is harder because he is such a gentle spirit but yet strong. Thanks for your comments.

  3. kNovember 15, 2013 at 7:05 pm #

    What an experience. What does one say.

    My experience was very slightly like your son’s. I was finally correctly diagnosed with uc and admitted to the hospital through emergency on a Wednesday. I had toxic megacolon and my colon perforated Saturday morning so it was taken out that afternoon. That was almost 39 years ago, before j pouches had been developed. I have had an ileostomy ever since. It hasn’t been too bad; really I consider it a miracle. Of course I was older (32) but once you feel good again, life just goes along.

    I sincerely hope the difficult times are behind both you and your son, and that recovery moves nicely along.

    • CindyNovember 16, 2013 at 12:16 pm #

      K,
      Glad to hear you are doing well. We knew once he was diagnosed that it might come to this but were hoping to buy time in hopes of new procedures or even cure. We had always discussed reality situations but we knew too since a rn friend had done the surgery that we wanted to be able to do it by choice and to have him in better health than he was if he had to do it. He had been for almost 5 wks with no eating or meds. Our problem is we had residents, fellows, gi drs…etc but no one talked together. We would have one come in after surgery and say let’s start him eating. Then the next come I and say no we are taking him off food he can’t eat yet. Some would count his calories when he did start without adding in his drink supplements and one come in and say oh yes we need to add those in. It wa s ludicrous.
      Thanks for your comments. Wish you health!

      • CindyNovember 16, 2013 at 12:31 pm #

        Oh and believe you me we are thinking about media….that is why I wanted to start here. We had even talked to a lawyer about looking into this not for money but for some prodigals to be changed to protect this from happening. They told us we have something but with as big of hospital we are dealing with it would take a lot of money , due to expert witnessess. The other thing is they are living on an old reputation and put so much money out in community and business, not to mention media advertisement. Even though it is not right….money talks. They said it would be slam dunk if the outcome was different unfortunately. We will take our son over that. We just want some protocol changed…like taking belly measurement daily etc….following their own guidelines …ex gowns etc., one would have one, one would not. It would make your head spin if I could tell it all. That is why we hoped something would get done with patient relations director. We even had a promise of copies of records and were told in our meeting that a lot of protocol was not being followed. Then all of a sudden something must of reared it’s ugly head in the review as they didn’t call back as promised in two weeks we had to call them at the four week mark. We were then told we would not get a copy of our records unless we purchased which would be over 500.00 and that the gi dr said our son was doing fine and that the surgeon said he would need another surgery at some point. I said excuse me I already know that stuff and that was not what you were asked to look into. I think it was a smoke screen…also I would lay money ducks are being put in a row and I wouldn’t doubt some documents are being changed or gone. Hate to say that but I really feel that and even told the director that when we had our meeting. So that is why I hope everyone puts the story out there. Feel free to put his story out here. We even agreed to take a lie detectors test about our story to them and asked that especially the nurse practitioners do the same.

        • bevNovember 16, 2013 at 12:40 pm #

          Wouldn’t getting this to the media be perfection? There are so many things in this world that a blind eye is turned to that it is almost beyond counting.

          What happened to you just screams malpractice, to use a nicer word for what I really want to call this….

  4. bevNovember 16, 2013 at 8:44 am #

    Unbelievable. The medical community always ‘knows best’ and we are ignored when we try and be our own advocates. Your story is tragic and it p***es me right off. I am so sorry…it must have been hell.

    Speaking of advocates, I am a huge one for fecal transplants and can not understand why we aren’t ALL privy to them! Another p**s off! I believe that millions of colons could have been saved over all of these years, had this breakthrough been used as treatment for UC, not to mention c-diff.

    It’s an outraged! Isn’t anyone else as outraged as I am??? This is colon removal…no small thing. Life changing surgery that a lot of times does NOT need to happen, unless, of course, toxic mega-colon has occurred.

    I hope for you, your son, and your family to have a wonderful life. You deserve it. What a fabulous parent you are!

    Bev

    • CindyNovember 16, 2013 at 11:55 am #

      I so appreciate your reply Bev….I unfortunately wrote that in a haste and regret so many grammatical errors, as I had just gotten off phone with the director of patient relations from the hospital and found not even an apology was going to be given for the way that our son was talked to by the nurse practitioner. We even had two pediatrician friends and numerous others that had witnessed some of this as they came to visit. There is so much more to this story but not enough time. But it truly meant a lot to read your comment.

      • bevNovember 16, 2013 at 12:18 pm #

        LOL…no worries…I always type so fast and furious (usually because I’m put off with this whole UC condition and all that it entails) that I really don’t even care about all of my spelling mistakes, etc!!

        Two pediatricians witnessed some of these things, too, huh? That is not really surprising considering all of the things (egos, mistakes, etc) that go down in hospitals.

        No apology either? Again…sadly…the ego thing again. A lot of ‘them’ think that they are above all of us ‘laypeople’…hmmf…they are just so far better than we are that if they were to ever apologize for anything, it would be like admitting that they were, perhaps, wrong? Human?

        • CindyNovember 16, 2013 at 12:47 pm #

          I should clarify…my mistake the two pediatricians were our friends and even though the patient advocate knew they were there as we told them….they didn’t care. Like I said they know no one can touch them pretty much. You bring up many great points…it’s sad.

          • bevNovember 16, 2013 at 2:36 pm #

            It’s the world we all live in…but I try and be an optimist and an advocate! Sounds like you do as well.

            Keep fighting the good fight. I will.

  5. BarbNovember 18, 2013 at 9:49 am #

    Yes keep fighting Cindy! Maybe one day your story will be on 20/20 or Dateline. Then the whole world can be educated on UC. I am here for you to support you and your son especially. How is he doing these days? Sending well wishes to him. =)

    • CindyNovember 18, 2013 at 10:25 am #

      Barb,

      Thanks for asking…he is doing well. He is such a positive kid with a tender heart for others. He still talks about some of the other kids he saw while in hospital and worries about them, in the fact that so many had no one with them or coming to see them. We told him we didn’t know why he had to go through what he did but God would use him in a special way someday. Maybe to be a dr that comes up with a cure etc. He still tells us thanks, which kills us even more, for being there with him. That’s what he would say when he was sitting in he bathroom at the hospital with both ends going. Talk about a killer…when you see them in so much pain and can’t fix it as a parent and they are thanking you! He would also make comments as there are kids worse than me in here. I do t want to sound like a bragger but that is the kind of kid he is….not perfect but an amazing kid.

  6. AngelaNovember 18, 2013 at 5:23 pm #

    I am so sorry to hear that this happened to you! I myself was diagnosed and taken care of at Nationwide Childrens’ in Columbus 12 years ago (spent around 10 years there) and I am just appalled that they treated you with such disinterest! Who was your doctor there? I hope he is doing better now and that whoever is responsible is held accountable.

    • CindyNovember 19, 2013 at 9:41 am #

      Angela,
      Our son started with Dr. DeLorenzo but then we always had to see a fellow first Dr. Maria Khan. Then when our son became diagnosed he was asked to be in a study (protect) and then somehow we would always see Dr. Khan then Dr. Boyle as he was part of the study. We always said he could do the study as long as it would not effect they way they would treat him, they told us it wouldn’t. We became a little suspicious when at one office visit they asked why we had him taking fish oil. I stated that I would not just put him on fish oil that someone there had told us to give it to him. Khan then said in front of Boyle…do they want them on fish oil in the protect study. I could clearly see he didn’t like her saying that and tried to blow it off. So we took him out of study. I come home pull his file and find that when he was diagnosed they had us come in for an appt with the IBD nurse and nutricianist. It was written by the nutricianist that he was to take it for inflammation. We also would take research we had found on different treatments like FT or medications, diet etc. and Dr, Khan always got defensive about it…basically if they didn’t do it they weren’t for it. I used the example of a Childrens Hospital from Michigan that had been part of a study with kids and FT and that we had spoken with the dr. I said to her what is the harm…a natural biologic verse rat in Remicade. Anyway when he was starting into the flare this time she is the one that kept order tests over and over again and they didn’t want to do antibody test etc. I then reminded them that they told us when he first was diagnosed and in hospital to never let a flair go more than 6-7 days without treatment. I asked if we could try Humara…maybe but waiting on tests. We also had Dr. Gariepy who we liked as she is the one that first did his scope/diagnoses. When he was in the hospital this time we had to see who was on call. Gariepy was the one that finally listened as she was just coming on call and had to rush things with ICU team coming up to get him and prep him for emergency surgery. Bottom line they knew they messed up with GI team coming to see us all the time after surgery and asking us who we would want to follow up with etc….it was definite suck up time after that….except Dr. Khan was sure invisible by this point. It is just sad a patient advocate director could see and even voices some of the mistakes as we were telling the story and that it would be investigated. Said we would hear back in 2 wks. well at the 4 wk mark we had to call her. Just to hear her say we no longer were going to get a free copy of his record and literally just told us what the surgeon had already told us, about his future treatment as far as what he needed to do and that the gi dr said he was doing fine. Nothing like he will be getting an apology form the nurse practioners for the nasty comments and treatment. Nothing about the findings…which we know some were not even compliant with JCAHO as my husband is a biomed and had to tell them about some of their machines being on a recall. Not to mention the sterile protocol broke many times with witnesses. She didn’t even say this is our findings….which smells of cover up. They are so big and advertise with all the major tv networks, papers etc. No worries money talks.
      I just glad we have our son but like I said know we would if we wouldn’t have been there.

      • AngelaNovember 20, 2013 at 8:02 pm #

        I’m sorry to hear that! I didn’t have any of those doctors but I’m still shocked at their level of care. All my prayers that he’ll feel better!

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