Desperately need advice ASAP please!
AnonymousJune 22, 2008 at 2:08 am
It has been such a long haul for my grandbaby. We got good news and some horrible news. She now has some movement with jerking legs, head flopping about. She is off respirator, now has treck (sp?) in neck. All this would be great however they moved her from ICU Asterella Medical Center in Phoenix, AZ to a nursing home in Phoenix right after taking her off respirator! Doctors told the kids they inserted the tube in her for breathing incorrectly and she would most likely have permanent voice problems……what the heck does that mean?!
Yesterday they stuck the trek in her neck and moved by ambulance to a long term care place last night! The kids told me she was like a fish out of water, now no one was even in the room to watch her! This is not a rehab place, it’s dirty and smells of urine, they said it looks like aids taking care of bodily needs, not doctors even! They took her off all her pain medication, stopped all medications cold, right before moving her last night, she was on heavy pain medications (Morphine) they kept that thing in her neck to breath, my poor little grandbaby is crying in severe pain and left alone flopping about, her parents were kicked out at 8:00 pm last night right after she arrived. At least she can cry!
CAN they do this to her though? I feel like they just gave up on her, throwing her away to a nursing home, she still has not had a BM even, for over a month or even eaten any food, still on feeding tube.
All the stuff post and articles I have read on here with others going through this horrendous process I expected she would be in hospital, then [U]when she could breath on her own[/U] would then go to a rehab for that long road that many on here been down.
All I been able to do is pray and pray this past month that she would live, never did I think this would happen? Is this norm?
Those who gave me support when I first came in here will remember me, my granddaughter just finished her training with the Army, was home on leave, went to visit friend in AZ before reporting for active duty, while in AZ two days she came down with GBS, was totally paralyzed and admitted, shortly after it was all down hill, in all of a month she was on respirator, spleen was hardened (not sure why), pneumonia, strep, and staph set in. She has completed both treatments, the latest being 7 days of blood cleaning. Pneumonia cleared, not sure what results were of other things. All this in a little more then a month!
The darn kids let the doctors rule the roost and don’t ask questions! I can’t be there, this is killing me hearing all this! This girl needs help NOT being shuffled off to a nursing home and being told there is nothing else they can do!! Am I wrong? She is fully insured by the military, they should cover all her medical care??? OMG I can’t believe this is even happening, she is only 19 and just starting her career with the Army, she was so proud to serve. She was due to report for active duty in Fort Hood, TX but never made it.
Now the hospital basically kicked her out! This must be an insurance issue??? Where is the military now?! Yes I am VERY angry right now! Her parents are going insane with worry but don’t know where to turn, they don’t have a PC in the hotel and also think what you read on the internet is hog wash. I have tried to tell the kids about this site, told them this is the real meal deal, these folks either walked this road, are walking it or have or had a loved one going through this, I tried to tell them you all are the movers and shakers of GBS, there is no better knowledge out there then from folks that been through this.
If anyone can please give me some advice please do! I would forever appreciate any help/advice we can get. They will be moving her again on Monday, from what I gather they want her near her active duty station in Fort Hood, TX and told the kids she will go to Temple, TX but they don’t know what kind of place, they just said it was a private place, not a military place. This would be closer for us being near Dallas, TX and I would love to hold my baby girl, even for one minute! But I truly would rather her be sent somewhere they can help her! It is now early Sunday, Monday she will be put on a medical plane to somewhere near Fort Hood, TX, will it be another nursing home? I just don’t know where to turn!
Sorry this is so long and all I do is ask for help! I would have been back sooner in hopes to help someone else, not with all the knowadge you all have to offer others, just lend an ear and maybe lift someone else up in prayer. I got sick myself, was just to drained to come on here.
AnonymousJune 22, 2008 at 3:56 am
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…..
AnonymousJune 22, 2008 at 12:52 pm
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
AnonymousJune 22, 2008 at 1:47 pm
Thank you for the prayers and support. I noticed Perry you are from TX, do you happen to know of a neurologist in TX that has dealt with GBS?
I am sorry for all that rambling in last nights post. I was just waaay stressed to even explain, this hospital my granddaughter was in is a civilian hospital. The nursing home/long term care place they moved her to is also civilian, both in AR.
Why would they release her the same day they stuck a trek in her throat, only to move her two days later to San Antonio. Seems they could have safed her that stress being she already been there for over a month now anyway, what would two more days be!
Can anyone please tell me if this is common being move to a nursing home type facility between ICU stay and Rehab?
Thank you once again for all you do!
AnonymousJune 22, 2008 at 2:48 pm
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
AnonymousJune 22, 2008 at 2:49 pm
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;)
AnonymousJune 22, 2008 at 3:16 pm
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)
AnonymousJune 22, 2008 at 3:44 pm
Jamie thank you for taking the time to tell me your story and all the details. Just when we think our world is falling apart, hearing others going through even worse makes our stituation look mild. Girl please know you have helped me today more then you will ever know. I will keep you, your family and your little unborn in my prayers. Just last night I was reading on this site and was so amazed at the success story’s delivering healthy baby’s while having GBS or the many vareints while PG. Thank you for being such a kind and giving person:) God will see us through these hard times.
AnonymousJune 22, 2008 at 4:23 pm
I am waiting more word from the kids and will see if she is going to Temple or San Antonio, military or civilian. I may have not been totally listing to the kids last night, my mind was reeling with worry from all they were telling me.
Today is much calmer and I will push for to get her in somewhere that is experienced with GBS, hopefully we have a say if military or civilian. Don’t get me wrong, I am not against our Gov., I backed my granddaughter fully on her choice of enlisting. I just don’t agree on our world issue right now and yes I do expect them to back her up and be there for her, like she planned on being their soldier had this not happened.
My anger last night was out of fear for her. You all have helped calm me, gave me strength to help her. I will be able to be more help with her being back in TX and will see first hand what is going on.
Someone on here shortly after I found this board advised me to start looking ahead at a good rehab place. At that time we were just hoping she would live that long, she was still going down hill, each day it seemed more so. I shared that advice with the kids, they were not ready to listen. Last night was a learning experience for them, now at least they know one just can’t trust your whole life in a few doctors care, one has to be pro-active in all things, especially in health care! They of course don’t want to hear that from Mom though, always have to learn the hard way 😉
We will get through this! Just wish they wouldn’t have waited till the last minute letting that place make those decision on her moves. With it being a weekend there is not much one can do in the way of phone calls. So my grandbaby will be moved once again, I pray this place is one that can and will care for her properly so we don’t have to move her again.
She is in much pain, jerking about and even making noises! God is good!! He heard our prayers, even though she is in pain at least she is alive and her nerves are waking up!
I also did not know having a treck one could breath on their own! I do understand now after reading these post that could be a ‘just in case’ thing. That helps a lot, making me aware and that maybe she is indeed breathing without assistants!
Soon as I get word to where she they are sending her tomorrow, I am going to her!!
AnonymousJune 22, 2008 at 4:58 pm
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
AnonymousJune 22, 2008 at 5:01 pm
OH Steve I do remember your post and you ARE correct! I need to not let this do this to me, God will take care. It is hard though, her and I always have been very close.
She had me down upon being admitted as her power of attorney for medical decisions in case she were not able. It was totally impossible for me to go to AZ. Right before they vented her the doctors asked her if there was someone close she wished to change that to. She gave her permission to the friend she was visiting. Her parents were on the way there but she chose to make her own decision on giving this to her friend if I couldn’t be there. The kids tried to change that once they got there but were told she is 19, a legal adult and as long as she can’t breath on her own then nothing can be changed that she put down. That was for her first admission, not sure what they did after. If indeed she does not need assistance in breathing, it is my understanding she then can make her own medical decisions. Until she is able to do more for herself that will be best, she will ask when not sure of things. Just like when she was in training, she called even in the night asking me what could be going on with her body, she was having some early signs even before graduating basic. Little did we know this all would lead to where she is today!
Trust me, I would never go to my granddaughter all distraught. I would do anything in the world for that girl. I call her my best friend, she also calls me her best friend. I have always been there for her and always will, if possible. Never would I go see her and cause a scene or stress for her. I guess I just got on here to vent some of my frustrations, mostly caused by fear. Being in a position to do something will for sure help keep me calmer 🙂
Thank you Steve, I needed this talking to 🙂
AnonymousJune 22, 2008 at 5:44 pm
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.
AnonymousJune 22, 2008 at 6:58 pm
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)
AnonymousJune 22, 2008 at 9:55 pm
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!
AnonymousJune 23, 2008 at 10:49 pm
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.
AnonymousJune 24, 2008 at 1:40 am
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
AnonymousJune 24, 2008 at 6:16 am
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.
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