I Am Not Sure What The Title Should Be?
AnonymousOctober 12, 2006 at 6:06 pm
Mason woke up friday night really sick. He was screaming his hands, stomach and head hurt really bad. I gave him his pain meds and five minutes laterhe started throwing up. He threw up every thiry minutes until 5:30am. I tired the suppository, nothing worked.
I had been awake all night, and could not drive the 1 1/2 hr drive to USA hospital(this is where he was diagnosed.). I was not sure if this was from the IVIG or something else. I just knew he was so weak he could not hold himself up in front of the toilet to vomit.
At or home town hospital, Mason was taken to a room. I had my binder with all of his information. I even had a read out explaining CIDP. I asked the doctor did he know what CIDP was.
Mason was dehydrated and the doctor ordered IV. When the nurses came in to start it, Mason was crying out ( with no tears)and he didn’t want it. I asked them to give him the Lidacane to numb it. They did this at his last IVIG and it seemed to work better for him. The nurses got mad, they told the dr what I asked for and he cancelled his IV claiming he was not dehydrated and did not need it.
They did an xray of Masons stomach. He had a large air pocket in the left side of his stomach. He also had a large amount of stool on L and R sides. His face had be swollen for a couple of weeks, we were told before was from the steriods. We had been to Gasrologist wed and started the 24hr clean out that night, with Miralax. I guess it did not work. While doing the Xray his dr from USA called and I told him what was going on. He told me Mason needed and IV and they also needed to check his gallbladded.
The dr did a CT of Mason stomach the gb was normal. He called USA and told Masons dr that he was worried about my psychological stability. He also told him he believed I had muchhouse by proxy (sp). Masons dr told him I was protective of Mason and babied him, but Mason had a real disease.
I did not find all of this out until yesterday. I had gone by DHR trying to find out about grants, the Social worker called me into her office and told me I had affended a dr sat. She said I must have intimmidated him.
When we got to USA the doctor could not believe my hospital sent him home with motrin. Mason was put on an IV ASAP, and a shot of Morphin. He was admitted and an feeding tube was put down his nose with meds adm through it. Sun afternoon the IV was started and two hours later he was almost his old self. We even noticed the swelling in his checks were gone. We were not discharged until mon after lunch. His IV came out ten minutes before we left.
I just got the physican notes and found out what the doctor wrote. His notes and time do not match the nurses.
1. Why order an IV if he is not dehydrated
2. Where was pain managment for 5hrs?
3. Why am I crazy because I love my child and don’t want to see him hurt.
4. Why was I in the wrong taking Masons information showing he had CIDP and what test and surgery he had.
5. What happen to my sons rights?
I am still in shock… The only good thing out of this. The director at USA ER saw Masons xrays and treated him. He gave me his card and told me anytime I wanted to call him I could. He would sit down with me and explain every test Mason has had. He knew so much more about CIDP, and symptoms Mason has been having.
AnonymousOctober 12, 2006 at 7:25 pm
Thank you for being there. I don’t know what I would do without you and Lori. I will be glad when things settle down.
I forgot to tell you this morning school called again by 830 and Allen had to pick Mason up. We decided to just home school until he gets better.
Talk to you later
AnonymousOctober 12, 2006 at 7:55 pm
Trish, Always and forever, you are your son’s advocate. Do not let any dr., nurse, or social worker try to belittle you into believing that you are not doing the best you can for your son. I posted a thread today about a small portion of my GBS journey 26 years ago, when I was 18, and although my mother and I have had our problems over the years, she was my advocate then and continues to be today. Even referred to her about a point that I wasn’t sure about, and she, to this day, remembers every conversation with every doctor, nurse, PT, OT, ST and was there for me every step of the way. I was infantalized by this disease and she and my father made every right decision to help me progress. You will do the same for Mason. He needs you as his advocate and 26 years from now will hold you up in high esteem as I do my mother.
I’m sure there are other GBS/CIDP patients who have similar stories, even adult ones, or semi-adult like I was.
As a mother now, (I inherited my kids through marriage), love them like they were my own, I have learned through observation, what it means to be a loving Mom. And I will use [B][U]you [/U][/B]as a fine example.
Take Heart, but don’t take crap……
AnonymousOctober 12, 2006 at 8:16 pm
Thank you so much. I am trying to be positive. I told myself months ago, I was not going to let anyone try and make me second guess myself. When Mason first was diagnosed and his symptoms would come and go for no reason, everyone would say ” He is putting on. ” That would drive me crazy. I know my child!! I know all my kids from deep in my heart!!! If something is wrong all I can tell you is I just know!! I have had to fight since July, always telling the doctors that.
Thank you for your support. You stepkids are lucky to have a stepmom like you.
AnonymousOctober 12, 2006 at 10:51 pm
Trish, you have every right to be protective and proactive when it comes to your son’s health. you are a saint for putting up with that dr for as long as you did and not knocking his block off. i would have. always go with your gut feelings, thats the momma in you yelling out! give Big Hugs to Mason.:)
AnonymousOctober 13, 2006 at 12:05 am
I’m still trying to catch my breath and stop my tears . . . No One knows Mason like you do and you have every right to advocate, advocate and don’t stop!!! I am deeply sorry that you have been mistreated like this. Dear Friend ~ do whatever you must for Mason’s best. And keep coming back here so that we can offer support to you. I hold your family in my prayer thoughts. Many hugs.
AnonymousOctober 13, 2006 at 8:04 am
Your story regarding Mason is infuriating. Please don’t stop protecting and advocating for Mason. As a parent, you will do ANYTHING to keep your child from hurting … and I think everybody here would support you in all you are doing to support Mason.
It really irks me (insert stronger language for irks … but I wanted to keep it clean) to see they way some people in the medical community respond or attempt care for a disease of which they are ignorant. I am so glad that you have been in contact with others here who have been through this and can offer support.
Wishing you and Mason the best,
AnonymousOctober 13, 2006 at 12:55 pm
Do not be worried about offending a doctor. Often the caretakers know so much more about what is going on with the patient than the doctor does. Your son needs you to stand up for him so keep doing it.
Also, you might try talking with the doctor and tell him you understand why he reacted the way he did but ask him to consider that you have info/experience about this disease that he does not…if that does not change the attitude then you have every right to [B]file a formal complaint[/B] with the hospital. I did it because of a doctor who thought I was just seeking narcotics (“for imaginary pain”) and kept telling me to go home and breath in a paper bag until I stopped having an anxiety attack. He was rude, patronizing and refused to admit me or treat me because “there was nothing wrong with me”. Several days later I was hooked to a morphine drip at another hospital and paralyzed.
Doctor’s need to know that they do not know everything and that patients are not complete idiots – it might make him think twice about his behavior before he does it to another desperately ill patient.
AnonymousOctober 13, 2006 at 3:31 pm
What you and Mason went through is horrible. There is no excuse for being treated that way. You did everything you could to try to help and protect your child. My advice is for you to make sure that doctor never attempts to treat your son for anything again.
This is a serious matter and could easily have put your son’s life at risk. File a complaint with the hospital, as Kathryn suggested. A doctor who approaches ANYONE, let alone a child in pain, with that attitude is irresponsible. He should be formally reprimanded.
Best wishes to a great mom,
AnonymousOctober 15, 2006 at 5:41 pm
The Dr that did this was a weekend doctor. I heard I was not the only one he had reported that day. Why are people so ignorant. I have to get Masons records from last weekend and take them to DHR and the hospital here. This will prove how the Dr here neglected my child. It will also prove how sick he was.
I am trying to figure out how this man became a dr? One day he will have to account for his ignorance.
Today people are still asking ” Are you sure he is sick, he could be acting like that for attention.” I wonder about people. If he feels better they don’t believe he was ever sick.
Mason is having a bonding issue. My kids have all been Momma babies. I don’t care, because I love my kids. He doesn’t want to go back to school. He doesn’t want to sleep in his own room. He is still really scared.
AnonymousOctober 15, 2006 at 7:17 pm
There’s nothing like being close to mommy when you don’t feel good or are very freightened!
As in any profession, people become doctors for many reasons. If only they were all compassionate and helping only from the heart . . . And, as in any profession, incompetence needs to be reported.
You know that Mason is ill. It really doesn’t matter what others “think”. They are just passing judgement without knowing.
You are such a good and caring Mom and I’m cheering you on 🙂 many hugs
AnonymousOctober 16, 2006 at 6:55 am
I had GBS when I was nine, and believe me, with all the scary things that happened to me it was so important to know and feel that my parents loved me and took care of me.
A few years later, just before I was having surgery on my foot I wrote a poem that I will try to translate:
I had a lot of pain in my life
and still this life is beautiful
that’s because of the love my parents give me
for it has made me strong and powerful
So follow your instinct and give Mason all the love you can. You will give him something priceless that will help him no matter what happens to him now and throughout the rest of his life.
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