Do I have high expectations of medical treatment?

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Regular Member

Date Joined Feb 2008
Total Posts : 132
   Posted 10/21/2008 5:47 AM (GMT -7)   
I feel I need to vent, so please bare with me. This may be lengthy but would greatly appreciate input-good or bad. Sierra's hospital stay has been the worst experience of my life. The only one I feel any confidence in is her surgeon. First of all, they are all "nice people" but we are not there to make friends. (Sorry if that sounds harsh) She is in a children's hospital so I thought she would get the best care possible. Not the case in my opinion! The nurses are slack to say the least. When you call they say they are coming and never show up until I go searching for them. And they get aggravated when I go to find them. It took way to long for them to come when she passed out in the bathroom with blood everywhere and shaking uncontrollably. My husband had to run down the hall screaming for help. When they finally got her responsive they were asking if she got scared from the blood (she didn't even know she was bleeding, which scared her more) then they asked if she was having her period. Are you kidding, if anyone has a period like that they would die! Yesterday, the surgeon said the nurses were to take her to use the restroom, stay with her and help her back to bed.....Again it took forever for them to come and at one point they left her in the bathroom for so long my husband and I helped her back to bed. The next time the nurse came in (which was a good hour or more) I don't believe it registered that she was back in bed and that they had forgotten about leaving her in the bathroom. We started taking her because they weren't and we were even keeping a log of her urine since they weren't checking it. I understand they are busy but come on, get more nurses on then. Isn't there a state limit as to how many patients they have anyway? This morning one of the surgeons partners came into to see her and told us her hemoglobin level hadn't changed but as long as it don't go down it was ok. Her surgeon has been saying it needs goes up every time. He said she could start getting up to use the bathroom, HELLO she has been doing that since yesterday afternoon.
I thought her specialist would be involved during her hospital stay and he hasn't been there at all. I am so frustrated! They have not given an exact cause of the bleeding, just what they think it could be. They never investigated other than blood levels. Shouldn't they do a scan or something? I can't imagine how things would've played out had my husband and not been able to have one of us there at all times. I haven't put a dent in the things that have went on. I don't think I have high expectations but maybe I am more sensitive because it is my child. I can guarantee that if she ever has to go in the hospital again it won't be there!
Sorry for the length and ugliness. So glad to vent some!
Dx w/UC in 2001 - controlled by diet.
Mother to 15 yr old daughter dx w/CD 9/07-  she had surgery for abcesses 11/07.  She is taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, prednisone 10mg-x6, 6 mp 50mg-x3, Flagyl 250mg-x3

Regular Member

Date Joined Dec 2006
Total Posts : 149
   Posted 10/21/2008 6:34 AM (GMT -7)   
I would put a complaint in with someone. That sounds pretty ridiculous to me. If it were my child I would be furious. If it were me I would be furious. Just my opinion. Hang in there-I know it's a stressful time. My thoughts are with you!

Bad flare May '06 resulted in CD diagnosis
Asacol: 2400 mg/day; Prednisone: 1.25 mg/day; Entocort: 9mg/day; Metronidazol
Started seeing a Naturopath-Castor Oil Packs, Liquid B Complex, Floragen, Ribes Nigrum, Herbal GI, Chlorella
"Life isn't about how to survive the storm, but how to dance in the rain"

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 10/21/2008 6:43 AM (GMT -7)   
First of all vent away. You now know the reason why you should never leave someone in the hospital alone. I do not think you have unreasonable expectations. But, I would ask the nurses some like "wow you all seem so busy and overwhelmed, is this normal?" "Is there anything I can do like say something to the admin to get you more people here you really seem overwhelmed?"

What they were asking about is the vaso-vagal syncope, with her passing out. Sometimes people pass out at the sight of blood, or just standing up with low blood pressure.
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Veteran Member

Date Joined Aug 2003
Total Posts : 1017
   Posted 10/21/2008 6:49 AM (GMT -7)   
I know that there is a hospital where I live that almost killed my husband at least 3 times and called him a drug addict. When he was there last I did not feel like I could trust the staff and had to take off to stay with him during the day.

Now for the good. We changed doctors which caused us to change hospitals. What a difference a good staff can make. He has been through er 11 times in 2 months and stayed for over 3 weeks and I never worried about working while he was there and knew they were taking good care of him. No he is not a child, but when you are in pain and cannot think you might as well be.

The thing is, just because they are nurses or work in a hospital does not make them good at what they do. They could have been the C students, they still get jobs.

Trying to put a little humor in this. But you truly might consider changing doctors and changing hospitals. I know that we used the same on for 17 years and the difference just this year from changing has been a world of difference and now my husband is saying things like - I bet I would not be as sick if I had changed to him a long time ago. I bet I would be dead if I had not changed to him, I do not belive that ------ could have handled me when I got this sick this year.

BTW - to explain. I have CD, my husband has Lupus, Fibromyaliga and Cyclic Vomiting Syndrome and yes as you can imagine - depression. So I have been through all kinds of docs as the patient and as the spouse.

Good luck to you and my your daughter get better quickly so you can more on to more positive things.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 10/21/2008 7:35 AM (GMT -7)   
You should complain to the hospital administrator immediately. If you are happy with the surgeon next time he comes in ask what other hospitals he is affiliated with and tell him you are wanting to move your daughter to a better hospital. If that donesn't light a fire under someone move your daughter to another hospital. If you dont you are taking a chance with her life and nothing is worth that. There are better places . We have three within 30 miles and only one is good. They treat you well there. Hope things get better but remember , if your super polite and your not getting the help you deserve,,,get mean...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 10/21/2008 7:35 AM (GMT -7)   
Hi Sometimes I guess if they must think that she has help available when her parents are there it was pretty much the same as when my teen had her tonsils out I was very glad I had stayed. I think you should ask her surgeon if they need or could do a scan or something I'am not sure what they do in her case perhaps others have some kind of idea but I know that would stress me out worrying.You could perhaps ask the Dr. if this is a common thing and what they do in situations that the bleeding has occured. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 10/21/2008 7:45 AM (GMT -7)   
Personally, I would complain to your surgeon, since you like and trust him. That way, he is making the complaint and you aren't being seen as a "problem" patient. Just an example, my Grandma was in the hospital last winter, and received horrible care. Her children went to the administrator and had a good talk. There were legit in doing so, and an anestheoligist backed them up even. But still, they were "marked" as being a problem patient. So, you do what you have to do, but beware that the chart will be marked.

It is absolutely horrible the care that your poor daughter is receiving. It is uncalled for. I always have my husband or mom do what they can for me without having to call the nurse. They are understaffed for the most part, and then when you throw in breaks, and lunches, it is hard for them to keep up at times. It's not an excuse, but I always figure if I can do it or a family member can, then I don't call.

Having said all this, keep standing up for your daughter, and do what you have to do for her safety.

Regular Member

Date Joined Jul 2007
Total Posts : 456
   Posted 10/21/2008 7:47 AM (GMT -7)   
Check and see if the hospital has a patient advocate.  I believe they're usually the pipeline to admin for complaints.  And document everything.  When you pushed the call button, when the nurse actually showed up.  When they took her to the bathroom and when someone finally came back to return her to bed.  If you've got facts in hand, instead of just complaints, you might be taken more seriously.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 10/21/2008 7:47 AM (GMT -7)   
Vent away Lil-momma, thats why were here. I think you should file a complaint myself. No one should be treated as poorly as Sierra has been. I also believe further testing should be done to make sure everything inside is okay before they send her home. I agree with the comment above about asking the surgeon if he works out of other hospitals. I sure hope Sierra gets feeling better. I am so glad to hear that you or Dad have been able to stay with her. I can't imagine how bad it would have been if you hadn't been there.


Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 10/21/2008 8:57 AM (GMT -7)   
I am so glad one of you are always staying with her. I am sure she is very scared and god knows what would have happened if you weren't there. I think you have every right to be upset and I hope you and Sierra get better care soon!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

Veteran Member

Date Joined Oct 2008
Total Posts : 1343
   Posted 10/21/2008 3:30 PM (GMT -7)   
You pretty much described my hospital stays (I, too, keep track of the urine levels because if it was up to them, the hat thing would always be overflowing). An old man I know recently had a cancerous tumor removed, and he had also shared the experience of lack of nursing staff. It's ridiculous that they don't have more nurses to care for the patients. I agree with bektold, start documenting how long it takes between ringing for a nurse and for one showing up. It would give the hospital a clue as to how poorly they're caring for their patients.

Veteran Member

Date Joined Feb 2003
Total Posts : 1811
   Posted 10/21/2008 4:12 PM (GMT -7)   
Contact the patient advocate or administration IMMEDIATELY! Document everything and write a letter. Yes, you WILL be labeled the problem patient, but if the nurses are that terrible, you can't be the first ones to complain about it. Get names, nurses' names, include them all in the letter.

IN THE MEANTIME - call the GI and ask him where in the heck he is and why he hasn't come by even once to check on her. As soon as she is stable or able enough - get her out of that hospital and admitted to a different one.

Those nurses sound like the ones who were on the case when I had my first child. They were so nasty and good-for-nothing. I complained and got a new nurse, poor thing had to work 3-11pm and the next day 7am-3pm because none of the others would take me. I felt terrible for her and I knew they had assigned her to me because of the fit I threw to admin, but I was as sweet as pie to her and she made things more bearable.

Your poor, sweet daughter. Get her out of there as fast as you can. Please keep us posted.

Veteran Member

Date Joined Jun 2006
Total Posts : 1156
   Posted 10/21/2008 7:25 PM (GMT -7)   
See, this is why I stayed with my daughter when she was in the hospital. It is difficult to transport a patient from their bed to the bathroom post surgery.

We too were unable to get a nurse to help in the middle of the night. After an hour, a man showed up. He was not even a nurse but asked my daughter if she would mind if he helped her.

the poor thing was so tired and in so much pain that she thanked him profusely for his help.

I use a wheel chair and I have fibro. therefore I could not help her. But, I could complain and that accomplished nothing at the time.

I would listen to the other folks on this board. I found out that my daughter's nursed was caring for 5 post op patients the same night.

the very next week we my dd had another surgery at a different hospital. Only one nurse was assigned to her.

My daughter was examined in a Children's hospital once and stated that she never wanted to go there again. She did not like the way the staff treated the children.

My daughter would say that you were correct to expect better care, so would I.

Your dd should be feeling more like herself soon. So hopefully, you can all go home.


Regular Member

Date Joined Jan 2006
Total Posts : 312
   Posted 10/21/2008 7:32 PM (GMT -7)   
I am curious as to which hospital this was and where its located?

That sounds pretty brutal and i would be raising hell and trying to get into a place with better care.

Good luck and keep strong.

UC since age 22, now 27.  Several huge flares since then.
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?

Regular Member

Date Joined Feb 2008
Total Posts : 132
   Posted 10/23/2008 8:07 PM (GMT -7)   
I have every intention of writing a letter and making sure that multiple copies are distributed to administration and such. I felt I should give myself a cool down period so that it is tactful, to the point and contains facts rather than fresh anger. The hospital is in Charlotte, NC. Thanks for the support.
Dx w/UC in 2001 - controlled by diet.
Mother to 15 yr old daughter dx w/CD 9/07-  she had surgery for abcesses 11/07.  She is taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, prednisone 10mg-x6, 6 mp 50mg-x3, Flagyl 250mg-x3

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