Just talked to WhiteBeard

WhiteBeard,

Oh my goodness....I did not expect to see a post from you when I logged on! Sorry your pain is so high! Hang in there and take care of you! Sending healing thoughts and hugs your way!!

Hugs,
Beckey

 

Dear White Beard,

    It is such a huge relief to hear that your pain is being controlled better. I must admit I was nervous when I heard about the lac of care immediately following surgery. It is so good to hear about you and from you!

    It sounds like the area in your neck will take considerable time to heal. I just have to say that I admire your strength through out the surgical process. I do not think someone else would be able to tackle any of the problems you have had to deal with since the surgery and I am so glad you were able to get the staff back on track.

    I know it is terribly hard to read and even function, so I will keep this short. Please know, you re in my family's hearts and prayers for strength.

*warm hugg*
       dani

Hello to all my family here on the CP Forum, I am unfortunately still in the Hospital, Yesterday was not a good day for me! Infact it was the day from "pain darnation" I think!  My pain was really bad yesterday! They had me on IV Toradol injections every six hours to help control my pain, but the stuff is extremely hard on your kidneys and you can only be on it for so long, well late Thursday night they had to discontinue it and Friday morning when I woke up I could barely hold up my head, the pain was so intense, I stayed in bed most of the day and just could not do anything, I was also pressing my button on my diaulid pain pump all day,, and I had been trying to wean myself off of it,, as I can not be released from here till I am off the pain pump. Well last night my surgeon started up the Toradol IV injections for two more days they started at midnight last night, and by this morning I am much better,I have been up and walking around and sitting in a chair, my pain has been back down in  the 6, and 7 range which is much more tolerable area for me! And I have not had to use the pain pump at all so far today! They have been giving me my normal 40mg Oxycontin every eight hours and two 5mg percocets every eight hours  and narco in-between  to keep the pain in check,, and I also get my Blacofen 30mg every 8 hours too! I know it sounds like a lot of pain meds, but even with all this stuff I have have not been totally and absolutely pain free! Anyway I hope that when they discontinue the Toradol this time that I will be ok with it, my surgeon just told me that it appears that my drug of choice for relieving my pain right now is the Toradol, which is unfortunate, because of the damage it can do to to my kidneys if used to much, He told me it is a very potent aniti-inflamatory med, that is telling me that allot of my neck and head pain is being caused by inflamation. Which makes sense, especially with all the swelling I have  around the incision area. Anyway that is all the news I have today, if all goes well I will go to the rehab facility sometime on Monday.

 

I again Thank-You all for all your responses, they mean allot to me, I keep you all in my thoughts and Prayers and I wish each and everyone of you all the very best in life! You all are truely my family!

 

White Beard

   Dear White Beard,

     It is so good to hear from you! I was anxious to hear from you yesterday. Though I had hoped you would be released to the nursing care facility... I also knew that it would probably now happen.

     Knowing that the toradol is the main source of pain relief is very telling! I do hope you are able to reign in the inflammation. Knowing that explains why so many attempts to relieve the pain were unsuccessful! I do hope you are able to slowly come off the toradol over the next few days. I can well imagine you are ready to get on outta there. Do you have compassionate nursing staff?

     When the surgeon looked over your incision was he pleased with the progress or concerned over the amount of inflammation? I guess what I am asking is if the inflammation is a bad sign? I hope not.

You will of course be in our family's prayers for successful recovery! Update when / if you are able too. We sure do miss your presence around here!

*warm hugg*
       dani

   

Dear Whitebeard
It is great to hear from you, although I wish your first few days would have been better for you and not such a struggle with pain.
I know on my unit, we often had to get the doctors to order the constant infusion on the PCA as well as the button pushes by the dr. This is more effective in keeping the pain more regulated. Like you mentioned, when you are sleeping, you are not pressing the button, so not medication is infused and when you wake up then you are in agony, therefore that low dose constant infusion is very helpful.
Glad things are getting more under control for your pain. The Toradol has been working well for you. That is also a medication that is ordered post op for the kids for 48hrs. post op and works so so well. Glad it is helping you as well. Let's hope you are over that difficult stage and that now things will start getting better, a little each day. Just take it slow my friend.
Please take care and keep us updated as much as you can.

You are in my prayers,
Suzane

 

    Hello WB!

       Darn that pain! Many here, know full well how you feel right now. Were in hopes the swelling will go down and give you better relief. If we were close by, of course we would be visiting you.

     Take it easy, and we enjoy the updates, but we wish the news was better on your pain. It will get there, and not anytime too soon. Hang in there!

    SE

Hello my dear friends, I was discharged from the hospital this afternoon, and I am nowat a nursing/rehab facility near my home. How long I will stay here is now in question, they said they had internet access WiFI how  ever it does not cover my room! So I went to the lobby where I was suppose to get on and so far could not! So they have an internet cafe with 2 computers and `15 min time limit I am using that now!  Hopefully tomorrow they will have this fixed! If not I will go home!  More to come.......

 

White Beard

Whitebeard,
So glad your out of that Hospital, sure hope the nursing home will
keep you on a regular medicine schedule! Hope your feeling better soon.
Prayers and soft healing Hugz
(((((((((((((((((((((((((((((((((((WhiteBeard)))))))))))))))))))))))))))))))))))))))

Chart and Golitho

Pain management has been an on going issue every since I had the surgery and coming to this facility has been no exception. Last night was a night I will not soon forget! Pain management was nill, I talked with the  head honcho this morning there has been a comedy of errors made from the hospital I was at on down to here!  I wasn't even given any discharge instructions when leaving the hospital, and neither was the rehab facility. Incision care, weight restrictions, nothing! I found out that they did not even discharge me with extra pain control meds, other than what I was already on. I did not find out where my nurse call button was at untill  8 this morning!  I talked with my daughter and as I said with the head honcho and I agreeded to stay till after my appointment with my pain management doctor tomorrow morning.  Then I will decide on whether I will stay or go home! I must say right now I am leaning on going home! Anyway I thank you all for your concern!

 

 Peace be with you!

 

White Beard

Hello my CP family!

 

I wanted to give you the latests up-date, last night I found out that the facility I was at charges sixty dollars, rond trip to take me to the doctor and back about a 35 mile trip one way.S I called mty daughter who was coming home for the holidays last night if she would take me to the appointment  with mt PM this morninb.  she did, and they also had the 72 hour care planning meeting for me this afternoon which I wanted her to attend.   After carefully weighing all the pros and cons, I made the decision with the help of my daughter, to come home  I found out that I have 30 days from  today and any time in the next 30 days I decide I can not manage on my own and need  more nursing help and assistence i can go  back to the nursing facility  and medicare will cover that remain 98 days I have left without having to be rehospitalized first!  I have found over the last couple of days, although extremely painful I can dress myself, and do everything on my own except take care of my hair and do my pony tail.  Well I solved that problem, today after being discharged to home  i had my daughter take me to a local hair saloon, and  I got rid of my pony tail and long hair, and got a normal hair cut! But my full "White Beard" remains intact!  We then went to the grocery store and the pharmacy and now I am home "sweet home"!!!!!! my daughter will be around for the next few days to check on me and help me! They will be going back home the end of the weekend! ( she is the nurse at Mayo's)It is so good to be home! I still have a heck of a lot of pain, I have 40 staples in my neck still and Hopefully they will be removed this monday at my appointment with my surgeon!   I call the incision my zipper because that is exactly what it looks like!  Right now I have difficulties with raising both hands up above or behind my head, and the whole back of my head in numb like when you have novicaine for  atooth extraction. if I move just right I think it is a couple of the staples that dig in and really zing me with pain down into my left arm.  Oh yes I did have one terrifying incident in physical therapy that  scared the whole staff and cauesed me unbelieveable pain.  As some might remember I have this nerve damage in my neck and it causes me to have larengeal spasms,  a violent gagging and retching thing that causes electrict shocks and needle sticks across my chest and back and up my neck and down my arms. Well some of the things they did to me in PT to my neck induced this condition. They were extremely worried about what affect this might have on my fusion, and of course what migh happen to me during these gagging/retching episodes, I was so hoping this surgery might have taken care of this problem, but obviously it hasn't!!

 

Anyway I want to Thank You all for all your support!!

 

White Beard

WhiteBeard,
I, too, am glad you're home and your daughter is helping. Are there any home health agencies in your area that could do home visits once your daughter leaves? At least that would be someone coming in every couple of days to check on your "zipper", etc. It doesn't sound like you'll be able to drive right now, and I know how tough that can be when you're alone. Maybe your daughter can help research these services while she's hear. I think Medicare would pay for them, but I'm not sure about that.

I sure hope you are able to improve, even if slowly, over the coming days and weeks. You've been through so much! Just know we're all thinking of you and sending positive healing thoughts.

(((((((((((WhiteBeard)))))))))

PaLady

WhiteBeard,
Now that your home, I sure hope you start getting some rest, so that you might
heal faster...Have been thinking of you and hope your thanksgiving is restful and
peaceful, and that your getting good pain control.
Will say prayers for you.
((((((((((((((((((((((((WhiteBeard)))))))))))))))))))))))))))))))))
Healing Hugz