John taken to ER again-UPDATE

So we had to rush him to the ER again this afternoon. He may have surgery either tomorrow or Sunday. Please pray for him...
I may not be checking in tomorrow...

UPDATE: They did another CT scan, and the infection has now spread to his colon. If they do surgery they would have to take out part of the intestines and the colon. I can't even begin to explain the recovery for that. It's not good, I'll leave it at that.
This is definately malpractice. They never should have released him in the first place. The CT scan they did before he left looked identical they said. So, it's bad enough to admit him, but good enough to release him?
I'm fuming mad...the whole thing is such BS. No one did their job right. He had a scan done on Friday and none of the dr's have even looked at it!!! It's still at the Imaging Center? Can you believe that??

I know I will have a big battle here, but this is going to put immeasurable pain on our family. Emotionally, financially. I mean the loss of income is 25% for disability. Like we can live on 75% of our income? Put on top of that the hospital bills? Oh, I can't wait to get that first bill. We have Health America, but they don't cover everything. I know my bill for my delievery of Sofie was $1200.

I don't know what to do...you guys do think we have a case right?

That's okay....dont' worry about us! We're big kids and we will play nice with each other... Hope everything goes well and maybe if they do surgery they can get him feeling better for both of you. Will be praying!!!

Oh man well I sure hope they find and take care of the problem...that is so misearable for the whole family.will be sayign prayers for you all.....

Lara I am so very sorry! It must be so upside down in your life at present. I think about it often! Prayers are being said for all of you! Life can have enough demands then something comes along and upsets the applecart and we really begin to feel as if life is just overcoming us! Been going through this myself with the demands of both sides of parents! I will be praying for you, John, the children and the doctors that will be attending John! May God Bless you all!

Please when you have a moment update us. I could say take care of yourself but your lot in life was to be born female!!!! Thank goodness we were created out of tough stuff!!!!! Big hugs!

You are in my prayers

I'm really sorry Lara. I know this situation from both sides, his and yours. Sending lots and lots of prayers. Hoping that he doesn't have to have surgery but if he does that he heals quickly and has no more problems! After things get settled and you know what is what, ask the doc about Remicade. It's the best thing that I ever had. Sooo soo sorry Lara, big big hugs and prayers for you all!!

(for John and all of you)

hugs to you, cuz I know you need them right now.

Don't worry about us, we'll still be here when you get back to us. Take care!

My prayers are with ya'll!! I pray a quick and easy recovery!!

I'll be praying for John and you as well, give us an update when you can

big hugs Lara, I hope things work out better for you all this time :(

Take Care

Hope that things will be better for John, you and your family today! Just thinking about you and sending up a prayer and wanted to let you know you are in my thoughts!

Lara,Keeping you,John and the whole family in my prayers! I pray this will help him on his way to a speedy recovery! Hugs Barbi

oh my Lara!
I really hope you do seek legal advise here!

Thats just crap what they have done re: Johns treatment!!

What the hay! I tell ya, some Docs should not be practicing. I had one like that .... Lara you can always talk with an attorney, won't cost anything. Did they say the entire colon? I'm hoping and praying that they get him on some high doses of Prednisone IV and it starts calming down and surgery isn't necessary. I'm sending lots and lots of prayers to you all. I just don't know what to say Lara.

Lara, I am so sorry you and your husband are going through this. our prayers will be with you. I know God can provide and He will. I can only speak from experience on that one. Terry had a heart attack 2 years ago and had a triple by pass so a week in the hospital an life flight to another hospital the last bill I saw was 250,000 we have no insurance and were still paying on his bill for the broken leg and surgery for that. Over whelming yes but we stood in faith and we are down to 50,000 left and believe me we do not make that a year we are doing good to make 30,000 a year but some how God is seeing it paid down. We are doing what we can when we can and He is doing the rest. So try to rest in His peace and trust for Johns healing and the rest will just take care of itself in time. Please keep us in formed on what is going on and let us know if we can do anything at all to help. God bless
Bev

Very true Bev. God does provide. Lara, hang in there. Let's just hope that surgery isn't necessary. I can't believe no one had checked the scans. Crohn's isn't something to mess around with. My Internal Specialist wouldn't even treat my Crohn's, he sent me straight to a GI doc. Many many hugs and prayers!

angelicbundles wrote:

What the hay! I tell ya, some Docs should not be practicing. I had one like that .... Lara you can always talk with an attorney, won't cost anything. Did they say the entire colon? I'm hoping and praying that they get him on some high doses of Prednisone IV and it starts calming down and surgery isn't necessary. I'm sending lots and lots of prayers to you all. I just don't know what to say Lara.

They can't give him steroids because of the abcess. They said it would kill him. I don't know why, but I'm guessing that if the abcess ruptures, he could go septic. So it's like this big circle, you can't get the inflamation down enough to do surgery (unless you take everything out). It's just crazy. I've been up all night, and emailed an attorney. So hopefully I can talk with someone today.

Michelle, I know you will be away till the 6th, but I hope we can talk when you get back.

Lara I would talk to an attorney for sure!! I will keep you all in my prayers Lara. I cant believe the drs did that, but sadly it happens alot. I pray he doesnt end up needing the surgery!
Let me know if i can do anything, i know i am far away, but if there is anything let me know!

Maybe it's time for another opinion! And don't be afraid to ask!!!

A few years back our daughter was so sick she could not even stand for any amount of time. Because of her age (30) they poo-pooed her. All we kept hearing was that she was too young...It had to be in her head!!! All the while she kept getting weaker. Finally we took her to Ann Arbor. There they found she had Hypertrophic Cardiomyopathy (meaning her heart was unable to pump her blood properly or completely). Her grandfather died from an enlarged heart and her uncle had a stroke from it. We too were surprised, but knew there was something drastically wrong. Thank goodness we took her to U of M and they took her symptoms seriously. It's been a long struggle, but with medication therapy she is her old self again with minor med tweeking from time to time. But what I'm saying is... life is too precious. When you feel it isn't right, seek more help until you feel comfortable again!

Lara, if he has this surgery will he end up with a colostomy? I absolutely agree that you need at least one more opinion before you make any decissions (and preferably a 2nd or 3rd opinion from a surgeon at a different hospital). You can have all of his medical records including scans sent to be reviewed by another doctor, but if he is not well enough to leave the hospital, you will need to find a doc with hospital priviledges where he is so they can see him there.

As far as a lawyer, it wouldn't hurt to talk to one now since a consultation is free, but I imagine they will advise you not to do anything until your hubby is released from the care of the hospital, and possibly not until he has recovered as much as he ever will. You don't know what other problems may come from this down the road, and if you accept a settlement you will not be able to go after them for any additional money later. That might be taken into consideration with a settlement.

Lara, all of your family are in my prayers. You go take care of them and don't feel any pressure to keep up with us here - we can wait!

Kathy, my dad was on sabbatical from private practice and we spent a year in MI when I was in 5th grade (in 1971), while he taught at the U of M medical school. That was between Ithaca, NY and Albuquerque, NM. He must have really liked it because he spent the rest of his medical carreer in teaching and research.

Lara,

Many thoughts and prayers... hope surgery goes well

Lara
So sorry to hear this update. I will keep praying for all of you during this difficult time. I pray God sends the right doctor to help your husband. Hugs Barbi

Lara, medical malpractice is very difficult to prove. The first thing that has to happen is for you to find another doctor who is willing to go against this doctor which is very difficult to do. A doctor who is willing to stand up in court and say, yes this doctor made a mistake. It can happen but is very far and few between.

Now, as far as hospital bills go, each hospital is given a million dollars in grants to help people pay their medical bill. You could check into that.

It is very possible for you to live on 75% of your income. Nobody says it will be easy and the kids will have to learn to go without a lot of luxuries but we all have to do what we have to do. I went from earning $2000 a month to $70 a month. You know I struggle but things work themselves out. Lean on your church at this time, also. Every church has funds to help their members.

Your number one concern at this point has to be John. He needs to heal and he won't heal so well if you are showing signs of stress in this situation to him. Call your pastor. Put the stress on him.

I hope the lawyer gives you good advice.

John and your entire family will be in my prayers.

Lara, I will say some prayers that John will not need surgery. If they tell you that surgery is eminent, don't be afraid to get a second opinion before making that life changing decision. Meanwhile, my thoughts and prayers will go out to you and your family.

hazel_may(Janie) wrote:

Kathy, my dad was on sabbatical from private practice and we spent a year in MI when I was in 5th grade (in 1971), while he taught at the U of M medical school. That was between Ithaca, NY and Albuquerque, NM. He must have really liked it because he spent the rest of his medical carreer in teaching and research.

Wow... you traveled a lot...and now you are in Minnesota!!! What field of medicine was your dad in?

saying prayer and sending well wishes to you and your family.

He are trying to get him moved to a better hospital. The transfer was all set. The surgeon he has now said he would discharge him, and the surgeon at St. Margarets said he would take him, looked over all his CT scans and gave a much better prognosis.
Then the insurance company said no, we can't leave. What the hell? My battle today will be with Health America!! Who are they to tell me what doctor we can go see???

Oh Lara! Good luck dealing with the health insurance idiots! I swear, if its not one thing its another. You will have to go right to the top. Don't give up. I know a woman who worked in the health insurance field and she would approve requests others automatically said no to, so keep trying!

aaagghhh! I can't believe it! If he is being released...what's the big deal????

Will St Margaret's take insurance other than UPMC?? I think there is something the State Insurance Comissioner can do if you want to move him and your insurance will not let you. This is a young man with a bad infection and should be given every opportunity to recover. Personally, I would move him and get him the help he needs, then deal with the insurance later. There is always Hill Burton Act money out there to help, too. And you would be surprised what the threat of a lawsuit will do to change the mind of the insurance companies. File an appeal for Medical Necessity immediately and then do what you have to do to protect your husband. Of course, that is If St. Margaret's will take him without insurance approval. You poor girl, all this and a blizzard coming your way. I am praying for you and your family

Baby Hugs,
Audrey

kathys korner wrote:

hazel_may(Janie) wrote:

Kathy, my dad was on sabbatical from private practice and we spent a year in MI when I was in 5th grade (in 1971), while he taught at the U of M medical school. That was between Ithaca, NY and Albuquerque, NM. He must have really liked it because he spent the rest of his medical carreer in teaching and research.

Wow... you traveled a lot...and now you are in Minnesota!!! What field of medicine was your dad in?

Kathy - here is some brief info about my dad's carreer (OB-GYN) from his obit. He is a little more than half way down the page, R. Richard Murray. (I have lived in NY, MI, NM, TX, VA, and MN. I was grown when my dad lived in Alaska and CA, and not born yet when my parents lived in Japan) http://obits.abqjournal.com/obits/2010/04/07

OB-GYN's are sued more than any other medical specialty. They have at least twice as many patients (mom and baby) and often multiple babies. My Dad's patients were usually high risk and often multiples because he was a fertility specialist, and because of that, he delivered many babies who weren't "perfect". Parents need someone to blame, and that usually ends up being the doctor who delivered their child (I'm not saying that there aren't actual malpractice cases). My dad wasn't sued as often as most high risk OB-GYNs, but he was sued several times. Medical malpractice cases are usually settled out of court because it is cheaper for all involved than fighting a law suit. It is actually very rare to end up in court. The number of law suits filed is why doctors and hospitals pay such high premiums for malpractice insurance (and why all of our medical care costs have skyrocketed) and have nothing to do with actual fault. You do NOT need another doctor to testify that there was any wrong-doing. Lawyers are very good at getting settlements, and they don't want to go to court any more than doctors or hospitals do.

Lara, a consultation with a medical malpractice lawyer will give you an idea of what you can expect. When my son was hit by a car (completely different legal situation), the driver had no insurance. I spoke to a lawyer about suing the driver, and after extensive investigation he said he would not take the case because the (elderly) man who hit him had no assets and no insurance, so I would be suing my own insurance company (my PIP car insurance paid 100% of Gavin's medical bills, helicopter, etc. and my car wasn't anywhere near the accident). Gavin made a complete recovery so any settlement would have been small anyway. I would rather have sued for my PTSD!

Well, there you have it. You just need to find a lawyer who is willing to sue for you, Lara!

Well, the lawsuit will wait for awhile...just trying to get him better. We have a new surgeon. One we feel a lot better with. John is on a feeding tube...possibly for a long time, but they are letting him come home Saturday, even with the central catheter in for the feeding tube. I guess he'll just have to go to the hospital to get it changed...not sure how that will work yet.

I am glad you got a new one! If he gets to come home than that is good right? He is doing a bit better? I know this is rough for you Lara, i will keep him and you in my prayers. I would suggest you document everything. Keep all paperwork and keep good records. In the event you decide to sue you will have everything you need.

Lara, you will probably be able to get home health care for a while. If he will be getting most or all of his nutrition from a feeding tube, you should be able to get a pump that will run through the night for the majority of his "meals" and possibly a few short feedings through the day. It is very easy and the pumps they use now are so much easier than the old tube feedings. They are like IV pumps - you set them to feed a certain amount in a certain amount of time. Is he on one already in the hospital? Are they still using a nasogastric tube or have they put in a Mickey?

I had a foster kid back in the '80's who was fed with the old "hang the bag" method through a G-tube. The group home I worked in a few years ago had 2 individuals who were tube fed - both with metered pumps during the night through Mickey buttons. They are easy to keep clean and more comfortable, and if they pop out, you can get them back in within a short amount of time. If you wait too long the hole will start to close and he will have to go in so they can stretch it. I'm sure this must be overwhelming for you, but it will become second nature if he is going to be on it for a while. It sounds like John should be able to do most of his care and feeding himself. The hardest part for him will be smelling the meals you cook for the rest of the family!

Oops - just read "central catheter". That is IV feeding, so I'm less familiar with that other than they need to be flushed to reduce the possibility of them clotting. Since that goes directly into his blood stream, I would think he will have home health care coming a few times a day, depending on how long he has the port and what type of feeding schedule. I work with someone who has a port from Chemo therapy, and they left it in for some reason, I don't remember why. She has to have it flushed every other month or so.

Lara, we are all good "Googlers" and can save you some precious time. If you have questions, just post and we will all come up with some trustworthy information, so you don't have to read and go through everything.

Lara, I'm so sorry to here about John I thought things were starting to look better. My prayers are with John, you and your children Karen is right on sueing Drs. even if they suspect you are right, they usually won't go up against each other or Hosiptals, and with the economy right now no one wants a law suit pending on there books, they take many years and very hard to prove, no one usually wins but the lawyers! We all here are praying for you. hugs, Kathy

Lara, I am glad you have another surgeon looking after John now. The tube feeding will be tricky for a while, but so much better than the other option!

I will keep you all in my thoughts that things run smoothly and settle down fast for you all.

We have a friend here who has crohn's and cannot take the medicines for it and won't do surgeries because she is allergic to the anesthesia so her diet mostly consists of cheesecake. Yes, she can eat cheesecake but gets really sick if she eats anything with any type of seasoning on it or anything so she prefers to stick to cheesecake LOL Sounds like John is a much better candidate for things to help him with the disease. Keeping you all in my prayers!

My thoughts and prayers are with you all at this terrible time. May god give you strength and peace to get through this time. I just pray that John will be much better very soon. God bless you all. Barb

So sorry to hear that John is so ill again, Lara. I'll keep you and your family in my thoughts and prayers.

Please try to take good care of yourself through all of this.


Hugs,
Beverly

Oh Laura I am so sorry! You are so right about getting him better and then worrying about the legal aspects. If there is anything I can do please let me know! I am a retired RN and my cousin also has Crohn's disease. Oh I so HATE the US healthcare system! AND insurance companies! When I was practicing there is NO way they would send someone home in his condition.....if I'm reading this correctly it sounds like he's on TPN (total parenteral nutrition) through a central line! Put your foot down, have a fit if you need to! Is he well enough to come home or is the insurance company making the decisions? Grrrrrrrrrrrrrrr! PM me if you want my phone number and need to talk! I'm a little rusty on meds but I got a great ear to listen!
HUGS Peg

Yes, you are right. He is on the TPN. They were going to try a night nutrition bag last night to see if his blood sugar drops. If it didn't, they are sending him home, and he will have the bag just at night, but he is still not allowed to eat or drink anything during the day. I am waiting for him to call me this morning to see what is going on. They may send him home today or tomorrow and will teach us how to change the bags and flush the line and all that...seems like a lot to learn.
I just want him better...and it really will be nice to have him in his chair in the family room watching the Steeler game on Sunday. Of course, how can we have Superbowl food and the poor guy can't eat????

I am not sure who's decision it is to send him home. They sent him home after 5 days last time, too, so it sounds like an insurance thing to me.

Lara... I am praying for you all, but our God is a great and mighty one! In all your ways, acknowledge Him and he will direct your path... The best advice I can give you as an RN is to be sure you start WRITING IT DOWN! Put down dates, times and names and who said what.. I can promise you that is what an attorney would advise. You also have the legal right to see his chart. Ask for it and don't take no for an answer. They cannot legally refuse your hubby that. Have a nurse or dr. you know who can read the notes with you. I promise that will get them hopping! We are all praying.. don't worry about anything but your family!

Lara, I am so sorry for all that John (and you) are going through. It is bad enough to have a medical problem as severe as this...then to have to deal with an insurance who won't allow you to have what you consider the best medical care. Praying for all of you.

Hi Lara!

I'm home! Sorry to hear John is still having such problems Being put on TPN isn't the end of the world, I promise! And hopefully it won't be for long! They do this to help let the intestines heal. I lived this way for about 4-5 months if not longer. It's do-able! I was thinking he would have home health nurses for at least a bit, I am pretty sure I did the entire time but it's really not difficult to do. You do have to flush the IV to keep it viable, and he will probably get a backpack IV machine so he can move around if he wants. Mine ran for 18 hours out of the day/night. I was on TPN and Lipids both. Best I can remember Lipids were only a couple times a wk but it's been awhile so don't hold me to it. This is probably a good thing. I'm not sure I understand the steroid thing, other than I do know steroids can slow healing. Ask them if Remicade is a possibility. The insurance company may not want to pay, but if the doc determines it's necessary, they usually have to pay. My doc had to fight to get me mine but he did. I'm so sad to hear he is having such a hard time. It breaks my heart to hear of anyone going through some of the things I did. It's such a painful horrid disease. I am praying so hard for him and for you all. If you need me I'm here.

Lara my prayers are still with you!!!

I found this belatedly after you got the package and found there you had some bad news - so I looked everywhere to find out what happened. I had missed the whole new trip to the doctors. This is a sad/happy time. You are sad because John is dangerously ill and you are happy because of finishing an Adrie Stoete prototype. I know the feeling because the week before I married "Hubby", my sister died of cancer. The only good news was she had met my husband and so approved of him and even bought us a wedding gift (and we only got 3 gifts so that was a big deal).

I didn't know that Crohn's disease could be so devastating, and I have a niece who has it. I do know about an abscess, my oldest brother died because of one in 1930 - but I do believe medicine has improved in the last 81 years. His was near the aorta in his neck and he was only three.

I would love to know how John is doing now - it's been almost a week and that is a long time.

It is so good the package arrived when it did - God does do marvelous work!

Yes, Lyndie, Dear, a week is a very long time, but therehas not been much change. He is home, but on TPN, which is a feeding tube. He has a central catheter that we connect the tube to each night for 16 hours, so the food goes directly into his central vein. He has had a new CT scan, and there is not much change. Some slight improvement. He is allowed to have broth as of yesterday, and he is happy about that. Poor guy made us hoemmade pizza tonight for dinner, but could only touch and smell his wonderful creation!! The bad stomach pains have ceased and he is going to try tonight with no pain meds. His back is what ails him the most at this point. The dr said that is refered pain from the inflamation in the bowels. Not sure what that means exactly, but hopefully that means once the inflamation is under control, his back pain will stop.
That's about all the update for now. I just hope tha they can control this flare up and that it doesn't happen again for a long time. I know this is something we will be dealing with forever, but I have heard that some people can go years without another flare up. I pray that will be the case with him.

Thats good news, actually, Lara. I'm sure once he's allowed to eat again he'll be on a pretty strict diet. Its got to be really hard on him, though. Still in my prayers.