Revision Surgery after implants removed. Question before Visit Thursday

[twinsmom]

reply to both

Hi, First of all so sorry for your hard experience with the infection. Wow! How very, very frustrating and scary! I would keep searching for a doc. There has to be someone out there who is willing to try to help. Infections scare doctors, I know in my state they soon will be posting the infection rates for all hospitals. My father was a doctor and invovled in the medical upper echalons and felt the hospital we are working with had too high infection rates. This may be a concern for the docs you have seen. I too have checked out the mapractice issue and you are right it won't work for infection.

Our concern has been the fact that despite the infection my daughter's instrumentation was extended not removed. And even that can't be construed as problematic because some well respected literature supports
that view. But I doubt that will happen again in most hospitals because I am sure the word will spread with her experience and with others who don't fit the results.

And for my professional friend, my daughter has seen a psychologist and appears to be coping very well with her disability ( except for the one acting out incident, which turns out to be unrelated to her medical problems.)

I have been seeing and getting counseling and medical help for awhile. I probably need more. The best help was talking to an Hospital Social Worker, I happened to grab on the phone. She talked my language since I was a Medical Social Worker and knew the Medical world intimately back in the day.

I had a child patient die from IV antibiotics back in the 80's. My sister also had almost deadly complications from a medport insertion. She had two collasped lungs and lost all her blood volume. She left with a Hospice referall. So my anxiety is based on past experience and has been getting worse as time goes on. I have been communicating with the nurse via e-mail and probably wrote anxiety provoked messages which the doc read and called blogs and thus my worry about this forum.

Surgical folks could care less about psycho-social issues and everyone in Medicine is pressed for time and under pressure.

Extended family members are very worried and have urged me to call regarding this past experience.

Multiple stressors for me equal high anxiety and it really makes me angry that we have had to go through this. We didn't need this.

But I knew when we started it was risky. I had hoped luck would be with us. I guess my issues are with trust. I don't believe this surgery is going to work. But my daughter does, and likes and trusts the doctor. He knows her back and he is accrediated.

Maybe what we need is a conference with him and the nurse without my daughter to go over the surgery and clear the air.

Thanks as always for your support and the support of this Forum - you have seen me at my most anxious and it has been a godsend to let it out!!! Mary

[jrnyc]

hey Mary
lets hear it for social workers...yaaaayy! our profession goes under appreciated so often!

i got septicemia (splg?) from an infected PICC line...almost died.....2 hours of oxygen left in my blood when they rushed me to ICU! so i know what can happen...but you and the medical staff are aware and are on top of it...you are doing all you can do...or anyone could do...

please ask for some anti anxiety meds if it gets to be too much..i dont know how you are sleeping with all this worry...so many family worries all at once must be horrendous stress for your body and mind! i think continuing counseling, not as a "catch her if you can" thing, would be important for you....stress can really eat away at you!

i am glad your daughter likes and trusts the surgeon...that is so important! and if a conference (without her present) would clear the air...maybe it would be the right thing to address it that way...

thoughts and prayers go out for you and your family...

jess

[twinsmom]

Reply and Question about Orthopods in Phoenix, Arizonia

Jess, yes we Social Workers are tramped on at times! For what we do, we deserve so much more than we get.

Sorry about Piccu infection. Yikes! I am glad you pulled through! I wouldn't have your support! I started a new med and it has helped.

My mom is going into Hospice so that will be a big help - summer with teenagers and young adults is chaotic!

I don't think we'll get a conference without Maddie but it would have been nice. The Department of Orthopedics Head called me in the middle of all of this and eventually asked what I wanted. I told him I wanted a Social Worker and a room with both docs so we could have a plan,. 1980's Medical Social Work Style! I didn't get it. They stopped fighting but it was clearly a stalemate. So July 13 will be the ID visit and schedualing of the surgery date.

She continues to do well with all of the adaptations. Her twin is doing well.
They both have adapted with the situation. Both date . Yikes!

My question for all here os about my daughter. I knew that she had scioliosis and was followed by our pediatrican. She felt there was no need for an ortho.
However, when there was talk of surgery for the twins, they diagnosed her
with kyphosis. I was amazed.

The Ped is great and my mother grew up with her father. My other daughter also went through the same thing. I had our ped ortho see her and they were right. They(twins) didn't feel surgery was needed(funny!) and neither did he.

Now she is complaing of back pain, no matter what she does. She just moved to Phoenix Arizona and I have no idea of who is out there. She is starting her first job and I would hate to have that make the fun of adult life complicated by bad medicine.

Thans so very much! Mary

[twinsmom]

Truth be told

I wanted to let you all know that I have been concelling a stigmatic disease. I also have LD which has become more severe as time and stress have taken their toll. My disease is a Mental Illness which almost causes people to stop in their tracks and assess and interact with you in a wholly different way then before you divulge the fact. The prejudice is great and for me who used to be a psychiatric master's level social worker greatly unnerving because I still held family prejudices despite my own attempt at open mindedness for my clients. Having Bipolor Disorder and dealing with four daughters with varying levels of scoliosis is to say least very hard. When one has severe and ongoing complications it is hell. With my supports that I have always had since I became ill, I have managed well. With the two same day surgeries I managed well. No one at the doc's or hospital would have guessed. I was super mom once again. This in fact had been my downfall. partime jobs, volunteering, and two sets of twins with a burnt out cancer survivor husband just doesn't equate to good Mental Health.

What has been very difficult is our subsequent story. The lack of administrative direction at a very very well known hospital and my push you pull you experience was gut wrenching. This forum saved my sanity literally!
The amibivlence about the docs and the strong positive feelings my daughter has about the original surgeon have been problematic in so many ways. What to do? I am the one who ultimately makes the decisions. We have had so many docs, friends, and family members push for going outside.Equally, we have had others push for staying.Consults seem only to make the waters murkier. And who to believe? At this point the famous hospital with a new Children's Section (which hasn't taken over the region yet because it is competing with an old very well established Children's Hospital) at least has gotten its act together and docs are actually working together not fighting.
And I have managed to stay almost sane. I have come close to the edges several times. I just want all of this to be over so I can be as stress free as possible and not lose anything more of my brain cells or life. I don't won't to lose years of retirement life because I did too much caretaking and had a Mental Illness.

[twinsmom]

4th Surgery date potentially set and 2nd consultation finished

We had my daughter's consult. It was disappointing. He focused on the upcoming surgery and was not that optomistic.Talked about luck and how our daughter had bad luck.Avoided going over the past surgeries. I tried once to bring up an ID issue and he ignored it completely He didn't belong to the SRS and had only five years of experience. his practice has two docs manage and do the surgery. He is a friend of our previous doc. So we kind of knew this was going to be a joke.He did not want to do the surgery.

I tried for an ID consult and that fell apart.
So we are stuck with our old one. His nurse didn't call me for a pain med refill I called twice -and sfter hours had to contact the
Peds Ortho on call which turned into the Ortho on call.

I broke down and apologized perfusely about how wrong I was and said blankity blank was the best hospital ever and could do no wrong. And he ordered the scrip and the docotor' nurse called back twice. We were really getting ignored until this past week.

Our insurance doesn't cover out of state. Schieners(sp) in Chicago would be our best bet with going out of state.

My family has such very bad luck with medical issues giong back to the 1920's. There was a famous fire at this hospital in the past and my great aunt's neurosurgeon died in the fire leaving her without any surgical options for her brain tumor.
Unbelieveable things generation after generation like ALS, Blindnes ,Death or near death from Childbirth, Cancer after cancer, multiple cases of Autism ect I thought the girls, because things come so easily to them, would dodge the family bullet. Not just one twin.Though she does have for bad luck things happen to her.

So many people have told us to leave and now we can't. My daughter has lost five inches. She is the star in all of this except for her very stupid foray into crime. She has done so very very well.

I don't want or I dont't think I can see her this way for very long. To have her dsiabled when she wasn't and to have a twin that made the surgery without any problems is so horrible to contemplate.

This is all my fault. I should have never allowed the surgery to take place Stupid StupDon't know how I will handle the wait during the surgery. I think I will ned to be sedated.

If you read this far thank you for reading. Please say prayers. Mary

[gmw]

Mary, I'm so sorry this is happening to you, your daughter, and your family. I pray you will get relief soon. This has to be very, very hard to live with every day.

[Lorraine 1966]

Oh Mary. gosh you have been through so much honey, you really have. And guess what YOU are still standing and I am so proud of you. I know what it is like to be so scared when you have a sick child and the mind just boggles with all that can happen. I think you are doing so well as I said before, especially with Bi Polar. Sweetheart this is nothing to be ashamed of, it is an illness just like a lot of other things and you dear are just coping so well. Ok you get a little over whelmed at times, but believe me the times I have sobbed and sobbed to my doctor about my beautiful son I really understand how scary it can be.

I think all of us handle our own illnesses better than when our children are sick, and they handle their illness better than we do. I always put on this smiley face for him and yet deep inside my tummy feels like it is going to cave in. He has to have a kidney and pancreas transplant because of diabetes. My thoughts and love are with you Mary and my prayers and honestly I think you are an amazing, strong, beautiful mother and your family are just so lucky to have you.

Lorraine

[jrnyc]

hi Mary
i am so deeply concerned about all you have been going through...especially this summer...i know i wrote to you a few times, on forum and private message...
you did not do the wrong thing...you did the best thing at the time...made the best choices at that moment...please please stop beating yourself up!
you sound exhausted!! i hope you have been able to get some sleep...i hope you are on meds to help...am wondering if any more.. or a change... in that would be a topic to squeeze in to a squeezed in therapy appointment, as i know you are very busy with family things!

there is nothing in who you are or in any choices you've made to be ashamed, embarrassed, troubled about! you are functioning under huge amounts of stress on top of stress...you're own difficulties dont make any of the stress of family worries any easier on you!

i hope there is time to rest coming up and time to talk to those, friends and professionals, who are there to offer help!

best regards
jess

[twinsmom]

Thanks once again!

Thanks you all for your support! I am getting support from here and there. I am on a new med ( a story in and of itself) and it should go in effect soon. I will have acess and along with a blessing from my Mom for a vacation after her death and my daughter's surgery and ultimate recovery. I am going to Alanon for my brother, doing some things at The Gathering Place which is a free center for those touched by Cancer. It has classes and excersize like Tai Chi. I have been too closely touched by cancer in each of the last two decade (another long story) I have the Hospice staff if need be and I have SS at the hospital. And of course the friends who have stoop by my through some really really hard times. Oh and the extended family has been great even though more emenshed than I would like.

My daughter is breezing through all of this. She can't go to movies so she and her boyfriend go to the Drive In Movie. I really don't need to worry because of her condition - at least I think I can - she still gets the talk!
I think as a family we have done very well under the circimstances.
I have been the one to write the e-mails to the doc's nurse giving updates and asking porbably wierdish questions. I don't think they know what to do with me!I have always been a loose cannon even at work I veer left when people expect me to veer right. So being in such a big medical system doesn't make me comfortable. There is not room for any type of varience.

And when I called the on call ortho doc as soon as I started telling me what the pain meds were for he knew the case. We are well known to the hospital.

And that in the end maybe a good thing.
Next year the Bahamas!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Mary

[jrnyc]

glad that you have support..and that you'll get to have a vacation...

take care..
jess