Shannon's Story - Please HELP

[dearAda]

Doctor can do what they can do. Taking care of TBI patient is not easy. I just wish no one else has to do what I am doing now.
It is hard to understand why they go through all the trouble to save someone's life, then later tell us to let her go. But at lease, they have given our love one a chance, to live.
I understand your angry and fustration, especially when you cannot do anything, just wait and hope. Ada got hit by the drunk driver on her way to pick up a friend who was drunk. That friend showed up 10 days later because he went to Cancun for Spring break! Life is not fair. This shouldn't happened to someone who is as nice as Ada. I'm sure you feel the same way with Shannon and I am sure other people feel the same way with their love one.
Hugs
Ada's mom

[wendyt]

Dearest Shannon's Family-

Marco did not open his eyes for a long time-days? weeks? I think it was more like weeks. His recovery was beyond slow. The team in the ICU told me that I would need to wait 6 months to a year to know what his deficits are. They were not saying that was when he would stop recovering but rather that is when I would begin to know what we are dealing with. I held onto that information and told myself not to panic or give up (which I did not do except for sometimes for 10 minutes or so and then had a good cry). The but is that the reality as others have said is that everyone who has a brain injury is different.

Definitely go for the second opinion. You need to do it for Shannon and for yourself. If you dont like this doctor find another. I know it is incredibly hard when you are in a hospital and there is only so much to choose from. Talk to the nurses-they have their own observations and stories. Marco and I go back often to UCLA and the rehab hospital that gave him back his life. I feel that it is our duty to show the people caring for BI patients that patients can and do recover-even someone in a coma for 33 days.

I would focus for now on what is right in front of you-trying to find another doctor who you feel better about. Trust your instincts. Sending you my prayers. Wendy

[shellshell1228]

Thank you so much Wendy. I appreciate your input. I will post tomorrow about Shannon's day today. It was not a good day.

[dearAda]

Dear Shannon family
Ada and I stayed at the Nursing home for 4 months before we could get her to Rehab Hospital and came home after that. We were very lucky that the nursing home let me stayed with Ada because there was an empty bed.
If you can find a nursing home for her, consider one that not too far away because someone has to be there everyday to watch over her. Regular Nursing home is not hospital, they only have 1 or 2 nurses for the whole facility, no doctor either. Most of the staff are CNA and they are always short of staff. Some nursing home has accute care unit, but not all nursing home do that.
Try to keep her in the hospital as long as you can, she is not out of danger yet. Ada had a few more episodes at the nursing home when the ambulance was called to take her back to the hospital in the middle of the nite.
I am not trying to scare you. It is a fact and I wish I had learn that before so I could prepare myself. I know it it is hard to accept that this is actually happening.
So I am going to shut up because I don't want to scare you too much, but if you think getting more information from me will be helpful to Shannon and her family, please don't hesitate to ask.
Hugs
Ada's mom

[scmom]

  Dear Shannon family,
 If surgery is the best option for Shannon, then you have every right to request it be done for her regardless of her ultimate prognosis. You have a right to a second opinion. You just want to be certain that she has clear lungs with her current infections, so the risk at the time of anesthesia is kept to a minimum. The hospital where my daughter was hospitalized kept delaying my daughter's surgery and putting her on the back burner too. They ultimately almost caused her death from a sodium imbalance because they kept her on antibiotics too long and caused a horrible diarrhea and  they kept her without food only to delay her surgery one more time, once because a convention was in town that they all wanted to attend. She lost fifteen pounds in one week. Stay diligent and do not be afraid to be the squeaky wheel. You are Shannon's voice.
  One of my daughter's injuries was a severely crushed ankle that one of the premier orthopedist's in the country repaired. My daughter is walking almost without a limp now. When we went to see him after my daughter had her remarkable recovery for a follow up visit, (remember, we too were told to put our precious daughter in a nursing home, that she was unlikely to ever recover to a functional state) he called her one of his "dead patients"...It was very hard to hear, but he told us his colleagues were  questioning why would he bother with a seven hour surgery on a patient that would most likely be vegetative the rest of her life and never use the ankle?  He told us that we he came in to the room and saw us talking to our daughter with such love , like she was still there, he made up his mind to do the best surgery he could. And, look at her now he says. That was the best decision he ever made. He said this has happened three times in his career. Like Wendy says, find some one that takes a personal interest, a nurse, a resident, some one you can confide your frustrations too. Ask to see the chief of staff and ask why your daughter is not getting the evaluations, surgeries she needs. Do this in a nice but firm way. Things happened much more quickly for  my daughter concerning her overall care once I let them know loud and clear that I was aware of what happened with her sodium imbalance  that was caused by sheer neglect.  I tried not to step on any toes but again, you are Shannon's voice, do not apologize for wanting everything that possibly can be done for her.
  Some of the things you are seeing like the deep pain, my daughter did not have for over 3 weeks either. If you feel that she is somehow feeling your presence, then she probably is. You most probably will have a very long recovery with Shannon but you sound like your faith and love and determination will help. My motto was "just put one foot in front of the other"...I couldn't think beyond that.

[marialeubner]

On march 11th my 23 year old son had a anoxic brain injury they do not know how long he was without oxygen for sure but they worked on him for 30 minutes to get a pulse, they had to inject medicine in his heart to try to get it going.  His body tempt was 88 degrees when he was brought into the er and before arriving at some point he had a heart attack and aspiration pnamonia they put him on life support and they to said that his chance of being brain dead was 99.99999%.  We were told someone  would be contacted us that day about donating his organs.  That never happened because his liver and kidneys were failing as well.   Two days later before they were going to do a mri he came out of his coma.  His liver came back the kidneys did not and he started dyliasis.  His speech thinking and memory were perfect.  The doctor said it was a true miracle that in 30 years of his medical experience he had never seen anything like this.  He should not be with us.  After 8 weeks of dyliasis his kidneys did come back.  Not that he hasn't had set backs such as hearing loss which he has hearing aids now, thyroid problems and nerve damage from the knees down.  After being in a wheel chair for 4mths and being medication to control the pain from the nerve damage is can walk short distances with a cane.  He was in a brain injury facility in wisconsin for 4mths and is finally coming home in a week and will continue with his physical therapy as a outpatient.  Hopefully no set backs will occur.  So don't give up hope doctors aren't gods and miracle workers they do the best they can but sometimes we have to let nature take its course and hope for some unknown reason that miracles do occur.  I hope that this will happen to your child don't give up hope.  I never mourned for my son when they told me he was going to be brain dead it didn't seem possible that this could happen to my son, I thought until i knew for sure that i would have to give the ok to end his life I would just be by his side as if everything was going to be alright.  I was lucky because it would of been very difficult to say good bye to my son i would of been a awefully lonely sad person.  As i told the doctor that even if he couldn't walk or needed to be on dylasis for long term and possible kidney transplant i would take my son the way he was, but i got better than that.  Hang in there some miracles take longer than others!!!

[shellshell1228]

Okay so Shannon was moved to a Vent unit in a nursing home yesterday. Tonight she was having a rough night and we were talking to the aides about positioning her and such when all of a sudden she opened her left eye and then closed it within a few seconds. Does this mean anything?

[savingthebrain]

Okay so Shannon was moved to a Vent unit in a nursing home yesterday. Tonight she was having a rough night and we were talking to the aides about positioning her and such when all of a sudden she opened her left eye and then closed it within a few seconds. Does this mean anything?

Eye opening is great, shellshell.  Sometimes stimulation causes eye opening - such as suctioning, turning, etc.  Having some eye opening is definitely better than having none.  It means your brainstem is in better shape.  Try to observe if she continues doing it.  If it's more consistent, it means her brain condition is improving.  If it's just a one time thing -- might be more coincidental or reflexive. 

[shellshell1228]

Thank you for the reply. There was no stimulation involved. Heck, we try and try to play with her to get them to open but this time noone was touching her. We were just conversing with the aide and boom there was her beautiful eye. Being we are not allowed to stay with her 24/7 - ignorant rule...its hard to really know if its happening more or not. I will keep you updated and hopefully its a good sign, cause right now we really need something to smile about.

Have a great night!

[wendyt]

I know the rules of the facilities where Marco was were very hard to take but ultimately I understand and appreciate them. Marco has told me now that he does not remember anything from the first 7 months after his injury-the time he was in ICU, the neuro floor of UCLA, a subacute facility and even his time in acute rehab. That is not an endorsement for not spending time with your loved one but it did give me some perspective. As painful as it was for me to leave him every night, he did not feel the same pain. Also more than one doctor stressed the importance of a fine balance of stimulation, love and familiar people, things and sounds but not overstimulation. I definitely agree with that approach. Even now, almost two years later, Marco tires very easily. It takes so much energy for someone with a brain injury (this is just my observation as a wife) to do things that we do with much less energy. So you are helping by not being there 24/7.

Over time, Marco opening one eye for a moment, became two eyes and then both eyes for longer periods. Sending you hope and energy. Wendy