Desperately need advice ASAP please!

There is plenty that can be done…………as opposed to “there is nothing else that can be done” as told to you by the military.
Find a “civilian” Neurologist in your area, inform them of this situation, and if he or she, is worth anything, they should be able to help you and (more importantly), you granddaughter…..get through this in a “humane” manner.

We are praying for you and your family’s relief…..

Perry

My thoughts are with you and I wish I could be there to help.

You need to find out where she is being moved to on Monday…perhaps this placement might be more suitable for her.

I agreee with Perry you or someone needs to contact a Neurologist in the area to tell them what is going on! Many doctors do not know about GBS or CIDP!

When she gets to this new place go in yourself and ask questions…go with your gut and if her parents are too afraid to cause waves you need to speak up for your grand daughter!!!

Keep us posted,

Rhonda from Canada

Is your Grandaughter going to Temple Tx., or San Antonio,Tx.? I don’t know about San Antonio, but Temple, is where a lot of military from Ft. Hood is refered to.
During this time of war with so many military, including medical personnel being sent overseas it is better for her to be in a civilian hospital. Just pray that where she goes, they know about GBS, have a good neuro and know how to treat her.
Sorry I can’t answer your question on why they transfered her from hospital to nursing home only to transfer her again two days later.

prayers to your grandaughter and family
bless you,

Shirley

Let me tell you what happened with my son (age 11, with a rare, life-threatening condition not related to GBS).

I knew what was wrong, but the people who mattered didnt believe me or were too proud to admit they didnt know what to do. The ones who did care, had no control over the situation. I started to believe that there was nothing more that could be done. I asked the pediatrician if someone else could help us (like u of m) and he said no, there is nothing anyone can do. i went to my parents house and cried while i told them everything. They were mad at me because i didnt do more, but i felt like i had done everything possible (primary doc, pediatrician, dermatologist, poison control, 3 e.r visits in 2 days, children’s hospital e.r. visit).

This is what they did, as grandparents…

My step-mom waited for me to leave the room (it was late at night) and then called the pediatrician at home. Just as he picked up the phone, i walked into the room and she handed me the phone, saying, “Tell him he’s sending you to U of M”. I had no idea what was going on, but i figured it out real quick. He told me that he would set up an appt for us, but that it was pointless. we went down to u of m the next morning. My son was admitted by the pediatric dermatologist (with pediatrician, pediatric endocrinologist, and pediatric psychiatrist consulted) immediately and stayed there for 2 weeks. My stubborn step-mom literally saved my sons life.

you may have more of an influence than you realize. Dont give up. You might irritate them, but who cares, as long as they know you are doing it with love. find conversations on here and print them off. your kids may read them out of curiousity, hoping to say, “i told you so”. We all know they’d be wrong. From their point of view, they are scared and have no idea what to do. They are trying to have faith that the same people your grandbaby risks her life for would have just as much respect for her. That is how i felt. Like, id never give up on anyones child, so my pediatrician wouldnt either. Go through the list of members and write down their histories, then give the list to your kids so they see with their own eyes that these people are credible. send a private message to Jerimy. maybe he’ll give you his phone number so your kids can talk to him directly. These people will do whatever they can to help you!

As far as her speech goes, being intubated (the tube that was down her throat) can easily damage the vocal cords. Im sure ive heard people say their voices were affected by the illness itself. I know mine is softer, slower, and a bit slurred, but they arent sure what disease i have (my pregnancy has limited my testing). I’m not sure why they’d send your baby right from icu to rehab. Confusing to me, unless it is that they kept her in icu longer than usual to be safe, so they were able to skip the step-down floor? If there is nothing attached to the trach that is forcing air into her lungs, then she is breathing on her own. Many times, they keep a trach in place just to be safe. They’d rather leave it in place for a while, so it is readily available in case of an emergency.

I know the thought of her being in a place that is dirty and gloomy is horrifying to you, but let me tell you this…who ever is caring for her has no control over the condition of the structure. It sounds old adn run down, so im sure it looks really scary. if it is a rehab facility, then you are right, there are most likely tons of nuses and aids, but not a lot of doctors. Hopefully, they are like most health professionals and do the very best they can with what they have. They do play a bit of a part in the cleanliness of the facility, but many times, they are overwhelmed with health-related work. They have to choose between doing the cleaning work for the housekeeper or giving their full attention to their patients. Most of the time, the will choose to help the patients rather than help the housekeeper. That is what id do, unless it couldnt wait for the housekeeper to arrive. Nurses are doing everything they can right now to demand safer staffing ratios, but until the government listens and the laws are passed, they have to do the best they can. I speak to you as a patient, the mother of a patient, and as a nurse. I’m not trying to down play the conditions of the facility. im just trying to ease your fear by telling you the truth from all points of view.

Sorry for the novel, but there is just a lot to say. I feel your pain from what i went through with my son, and what i am going through now myself. Im not a grandmother, but i saw the fear, hurt and frustration in my parents eyes and it killed me. They took over when i was being weak (although i didnt see it at the time). My step-mom put on the mommy hat and did what had to be done for my son, because saving his life was more important than sparing my feelings. I see no reason why she has to stay near her base. For what? The only thing that matters is that she is in the facililty that has the staff who will help her the most. Be it old and ugly or new and pretty – that doesnt matter as much as the dedication of the medical, nursing, and support staff.

I’ll say prayer for you and your family. I hope i didnt hurt your feelings at all:o Im surely not trying to defend anyone but your grandbaby. Good luck to you. dont give up. dont be afraid to speak your mind. print off any info you think will help and give it to anyone who needs to hear what you have to say; be sure it is from a credible source. put pressure on whoever needs a fire lit under their butt, but do it in a respectful manner. I’ll be thinking about you;)

Jamie

Dear Grams.
You mention San Antonio. They have a top miltary hospital there and it is also the home of the USAF training.. Next you have no control over your grand daughter unless her parents give you written permission to be her over seaer or guardian.
I have written you once before and I have you her and her family in my prayers as well as others and the one I am really worryed more about at this moment is you.
You are going to have to CALM YOURSELF DOWN or you will be in the hospital with a stroke or breakdown.Others includeing myself have been down this road and we have shared with you and if her parents do not want to read this form then leave them alone.
Also as stressed as you are at this writeing I feel you do more to upset the people trying to help her and what you have heard from others about her actions you do not know if they would have been as bad as they said.
You are loved and we will do all we can to help you and I had suggested you let it go and let GOD> With GBS recovery happens SLOW. and I feel it is a blessing at the moment that you are not with her constanley as she would be definatley stressed with all the stress you are under. and stress she does not need. If you feel her treatment isn’t good then contact the miltary. or your congressman. They have the power. and with your grandaughter in the miltary the miltary is in charge not you.
Grams my letter may upset you but if it will calm YOU DOWN then I have achieved my motive You have me worryed more than your grandaughter. again I humbley ask PLEASE LET GO LET GOD Your friend I hope (Steve)

I sounds like your granddaughter is new to the military health care system. She might not realize that she has the right to ask for a second opinion. I doubt if any of the military docs she has dealt with can spell GBS let alone treat it. I spent 25 year in the military and gone around a few times with military health care system went it came to getting care for my youngest daughter who was born deaf. Your granddaughter might want to ask her First Sergent or Family Services for information about her options.

If I can help please email me and let me know

Jim C

I was thinking about you yesterday and wondering how things were going! I’m glad your grandaughter is out of ICU and on the way to rehab. Sounds tramatic in the meantime. People do often take anything medical esablishment as gospel. I would refuse to leave if my child was in the hospital, nursing or other. Patients have a legal right to have family present if they want. In ICU the restrictions make it possible to provide care but in excuse now. I stayed with Josh the entire time with both hospital stays. They even allowed me to stay next to him in a sleep chair in ICU! Rehab will be much better. Keep us all up to date. It is very difficult to be in your position where you can’t be there. I am thankful was the one to be with Josh.
JoAnn

Hello Grams.
Thank you for your reply. I pray for you’ll every day and the others suffering. When you have a quiet moment think back to the 1st time she made you aware of her problem. see it and hold on to it for say 5 mins then start coming forward till you get to today look at how she was and look now and find changes for the better.I see one for you already. You found us LOL.
I was at Lackland AFB and the hospital there is not like most miltary hospitals. They do have very very good doctors.
As has been mention so many Neuroligist just do not care to get involved with GBS. or they only got several hours of info and training on how to treat GBS.
I realize it is hard to see one you loved deepley hurting.and it hurts us also to see the pain we create. When I was in the hospital I let it be known I didnt want any visitors. It made it lonley but I didn’t have to hide my pain and fear.I shared it with my nurses and doctors.
I got better with my GBS and then 4 months later found out I had to have a triple bi pass. My attitude was lets do it. I accepted what could happen and was at peace with myself and had it. I have felt good and the only problem is I still have lower back pain I have had for several yrs.
I would love to say relax she will be ok. she is a fighter and I feel if you look closley you will see changes every day in healing.I am so happy you will now be able to see her and hug her. and see what prayers from hundred of people will do.
I appoligize for being so open and to the point with you. I wanted you to take care of yourself because your little girl needs you now more than ever. I feel you are a good woman and a careing woman. Just take care of yourself as well. and turn it over and you will find yourself being guided.
Your friend (Steve)

Grams,

I thought about what i said to you, over and over again, and decided i meant every single thing i said, plus more. I thought of some other things id like to share with you. Again, im speaking as a patient, a mom, and a nurse.

These are things i tell my own patients and their families…

1. [B]You are the boss[/B]. It is your body, your life. I work for you. The doctors work for you. The support staff works for you – not the other way around.

2. [B]Ask lots of questions [/B]and don’t give up until all of your questions are answered. By law, you have the right to know everything, to make informed decisions.

3. [B]You (or your DPOA) have the right to make your own decisions[/B], even to refuse care, as long as you fully understand the outcome of your decision. (So, your baby breathing on her own does not necessarily mean she is able to make her own decisions. She has to absolutely understand the impact of her decision, and any other options that are available). She also cannot be under the effects of any mind altering medications, like pain meds.

4. If you have any frustration or anger or fear, [B]speak up [/B](to staff). I will not know and i cannot help if i have not been made aware. As obvious as the issue might be to you, it may not be obvious to me.

5. [B]Say exactly what you mean[/B]. For example, you may say, “She looks uncomfortable”, and so the nurse repositions her in bed, gives her a sponge bath, or gets her up into a chair. You could get upset, thinking, “I told her she looked uncomfortable and she didnt give her any pain medicine”. So, speak literally and instead say, “I think she needs pain medicine. Can you give her some right now?” Seems simple, but really makes a huge difference in her care.

6. [B]About staying in her room after visiting hours[/B], each facility has different rules. Did they simply tell your kids that visiting hours were over? Or did your kids ask to stay and they were literally told they had to leave? If they made it clear that they wanted to stay and were still made to leave, then they need to ask why. Is it the flat out rule, without exceptions? Is it because she has a roommate? Is it because she (or a family member) has asked to limit visitation hours so she can get more rest? Is it because they only allow one person and there were both parents? Is there a lounge a couple doors down that they can sleep in and still be near to poke their heads in during the night and be back into the room early in the morning?

7. [B]About going to another facility[/B], im not sure what the military is like, but in my experience, ive had plenty of patients refuse to go to certain facilities. And, they are the boss. It caused me a bit of a mess, rearranging life-flights, doctors, admission, etc, but that is what they wanted, so that is why they got. People don’t refuse care for no reason. Like i tell them, my job is not to be your drill sergeant and force you to do what i want. My job is to help you make informed decisions about your care. Then, it is up to you to accept or refuse the plan of care.

8. [B]Realize that if someone is angry or being difficult, then most times, there is some need they have that has not been met. [/B] If you, your grandbaby, your kids, anyone is feeling gumpy, angry, irritable, etc., then dig deep for the root of the problem. Once you figure that out, then you can address the problem (most likely something to do with fear/frustration about your baby’s care), and everyone can feel better – your family and your health care team.

Ooh, gotta go. Kids need me. Take care! Good luck!
Jamie

Great advice Jamie!

I did not see your original post. Sorry if this has been discussed. Have you thought about the vaccinations that she got? My husband used to be in the army and he’s told me how they line them up and give them vaccination after vaccination. They even “lost” his records on them. He is 31 and whenever he gets sick, he gets really sick. Everytime he gets a cold is goes into bronchitis or pneumonia. That is not normal! He is young and not a smoker.

I am sorry she is going through this! I now know what powerlessness is after being paralyzed. You feel that for her as does she. I will pray for her and direction for the family.

thanks, josh’sgram;)

you know, those are things i learned through experience. it is easy to give advice to other people, but me taking my own advice is a different story:rolleyes: I’m a timid person, so i can act bravely for others but, for myself, that’s more difficult. it is something im working on:D

I am in Australia and i have learnt from reading stories here that our medical system is vastly different but I am presuming some things are universal.

ICU is expensive (here it costs $1500-$2000 a day) so once she no longer needs intensive (full time one on one) care i guess it is to be expected that they would move her – especially if there are limits on insurance etc. It sounds like her move coincided with coming off the ventilator. I would take it as a positive sign that she is out of ICU and they have “downgraded” the level of care she needs. It is hard going from ICU where you get constant attention and care to being an ordinary patient. I rarely saw a doctor after leaving ICU (where i would be seen several times a day) but there isnt a lot they can do anyway. As long as their are nurses tending to her needs (nurses are angels in my opinion) and she is getting physio, that is what she needs to recover.

With a trachy she can still breath on her own, it is just that the air is going in via her trachy not her mouth. there is an inflatable cuff that can be deflated which will allow her to eat and talk (once her swallowing is ok). I was told that a possible side effect of the trachy was damage to my vocal cords but my voice was fine. One day I mouthed “thanks” to a nurse and the word actually came out. It was such a surprise after 3 weeks of silence! So see the trachy as another positive sign that she is on the road to recovery. I wasnt allowed back to my local hospital for rehab until i got my trachy out as they werent equipped for a trachy patient. At least a rehab facility should be better equipped for her needs.

I dont mean to play down your concerns, i am just trying to put a positive spin on things. You must feel so helpless being so far away but i am sure you are taking an enormous burden off her parents. Hopefully if she is moved closer to home you might get a chance to see her and i am sure it would make an enormous differece to her just knowing she is closer to you.

Things might still look pretty bleak to you but from your first posts i can see how much progress she has made and we all pray she continues to make a good recovery.