Briarrose update

[Singer]

Oh my! That is extremely scary. She should not be enduring that much pain. Once I was off the IV meds, I received regular shots of Dilaudid (a cousin of morphine but better) before I had to move or go to get x-rayed and it was extremely effective. I personally feel that the answer for Shell is not to get off all pain meds this soon, but to insist that the surgeon keep trying with different combinations. What helped me also was to take long-acting Oxycontin (I think 20 mgs.) and then take Percocet on top of that.

Hopefully the transfusion will help with her hemoglobin levels.

As far as activity goes -- certainly while you're in the hospital just getting up and down to go to the bathroom or sitting in a chair or walking down the hall is plenty. Be sure to get very specific instructions from the surgeon before discharge becaise they tend to have widely varying opinions about when to start PT and what exactly their patients' activity levels should be.

Good luck and tell Shell to hang in there.

[Chihuahua Mama]

She collapsed to the floor while waiting for X-rays in the radiology waiting room.
As far as pain, she wasn't getting any help from percocet or morphine or any comination of the two. She gave up and quit taking any pain meds and there ended up being no significant difference in pain on or off the meds, they were both so intense they made her come close to passing out whenever she tried to move. The surgeon got the point and decided to try tylenol & codine, we're waiting to see what happens with that.
Anyway, we were wondering if anyone here had any resources or insight into how to begin making physical activity a helpful part of the healing process. We don't want to hinder the recovery by too mch or too little activity and it's all very confusing, (more so because of the pain). If anyone has any experience or insight it would be helpful, I'm sure.

OMG. This is my scary hell in two weeks.

Shells Husband...I would say at this point you need to be SHOUTING to her doctors and nurses about her pain meds....forget the physical activity or healing, this girl needs help with PAIN and NUTRITION. I'm no expert, but I think that simple Tylenol and Codeine in pill form would be tantamount to pissing in the ocean for releiving her pain.

"Physical Activity and Healing and Hindering???" When you see your loved one crashing to the floor to take X-Rays? It's time to step in. I'm no expert, but your wife depends on you. Do something to help her and don't believe Hospital Staff!

OMG, I am going to beat my children over the head to make sure this doesn't happen to me.

[txmarinemom]

Don't worry right now about hindering her recovery with lack of activity. Recovery can wait until she's not *collapsing*. Getting out of the hospital in ___ days is so ridiculous anyway. She needs to be WELL first.

Why did they not know her levels were so maladjusted??

Get the IV back IN, get her transfused, get her levels up, and get her pain under control.

Get ahold of her Dr. and DEMAND a plan. When she's that weak and x-ray comes for her, say NO. She needs you to be her voice right now.

Be LOUD.

[connier815]

I'm so sorry that Shell is going through all this. Please let her know that I'm thinking of her and praying for her. I agree with above posts. You're her advocate. She's lucky to have you there to do what she can't right now.

Connie

[Susie*Bee]

I sent you a PM last night, but I'm not sure if you saw it. Did things settle down any over night? I'm so sorry Shell has been having so much pain and hope that has been taken care of by now. She (and you) continue to be in my thoughts and prayers.

[debbei]

The poor dear, I hope she can get some relief. She is in my thoughts & prayers.

[briarrose]

Susie B-I did get your PM and it was very much appreciated by both of us as is your kind encouragement on this thread. For some reason I can't send PM's on this blasted laptop right now.

Dilaudid is the only medication that seems to have any effect, they've tried every other combination known to man, she is resistant to them all. A pain specialist is meeting with Michelle tomorrow morning to discuss heavier medication; Dr. Fras does not like prescribing take-home meds stronger than Percocet, he likes to leave that up to pain specialists.

The fall might have triggered the lower back pain which is what is mainly plaguing her now. Very frustrating. She did end up getting x-rays the next day and they show no damage to her newly installed hardware or her spine, thank God.

I agree with everyone who said that I'm in the position to tell the nurses and doctors and pct's and all the others what my wife needs and doesn't need. She's timid to begin with and depends on me to articulate and proliferate the knowledge and importance of her needs. It's a sobering responsibility and one that keeps me on my toes. If I ever drop the ball on that, Shell tells me that Pam will give me a kick in the pants.

Her hemo is up to 9.7. Acceptable, but not stunning. She's still feeling rather weak. Pam, I think I confused timelines before. They knew about her low hemo before, it was at 7.7 the day before she was carted off to radiology, but her vitals were otherwise very good and neither her nor I saw a collapse coming before hand or we would never have agreed to the increased activity of that trip.

The one thing I don't understand is why, whenever there is a shift-change, we have to go back to basics and explain Shell's plight to a new set of ears every 8 hours or so, it's like no one talks to each other about Shell's status outside our room. It also makes me wonder why, in 7 days, we've only had a repeat nurse once. That's where my patience is tested, but fortunately we have had very nice and sympathetic RN's throughout our entire stay and I've had no trouble explaining things to them thus far, successfully.

As for increased activity, I agree that it isn't the issue at the moment. It will be absolutely crucial soon, however, hopefully sooner rather than later, and I appreciate the feedback I have gotten as to what to expect when it become more and more important. I try to deal with the current situation and look ahead at the same time so as not to get slammed with something down the road.

Thanks again for the support!

[Susie*Bee]

So glad to get the update and hear things are a bit more stable than they were. Sorry about lack of communication between shifts-- how frustrating for you to have to go through it all over and over. Hopefully the pain med thing will get figured out when she meets with the pain specialist tomorrow. Hang in there-- you're doing a good job in a very challenging situation. Give her my best and remind her I'm praying--for both of you.

[briarrose]

Hi everyone,

Thanks so much for all of the prayers and encouraging words. This hospital stay has not been easy since my fall on Saturday. I STILL haven't seen a pain specialist and it's been well over 36 hours. I ask all the time too. My white blood cell count was up, so now I have to have all these tests done to make sure there is no infection in my incision. Turned out I had a UTI, so hopefully that was all that was wrong. I had an MRI today to check for infection and I'm having a chest x-ray tomorrow.

I kind of freaked out last night when I asked for some pain medicine. They had given me injected dilaudid 3 times and it actually worked, so I was expecting a 4th. The nurse came in and said the doctor wanted me on oral meds. I starting crying like crazy. My pain was at 9-10 and I was going to have to wait another 45 minutes until it kicked in. Also, the nurse was instructed to give me one fourth of a 2 mg dilaudid pill. She felt awful and ended up giving me half of one instead and a morphine injection 20 minutes later. I just don't get why I haven't seen a pain specialist and am therefore stuck here until I do.

Sorry to sound frustrated and annoyed, but I was not expecting this horrible pain that refuses to be treated. If I hadn't fallen, I would most likely be home by now.

I just wanted to update everyone a little bit and vent some too.

Take care

Shell

[geo]

Geeeeeez! I haven't been on here in awhile, so I'm just reading about your ordeal, and I am so sorry you are going through all this. It was definitely time for a transfusion if your hemo levels were that low, atleast they got that right....

I hope that they have found a way to help manage your pain since your last post - the kind of pain that comes from this surgery is nothing you should have to endure for half an hour, much less days. God, I am sooo sorry to hear about all this, my heart just goes out to you.

Hopefully treating the UTI will help with your lower back pain. I remember wondering why so much of my pain was in my lower back, since the surgery had been focused in my thoracic spine, but it was explained to me that it was because the compensatory curve down there was straightening out too, and the muscles were being strained.

Just know that there's lots of us thinking about you!

[briarrose]

Shell is home and sleeping comfortably. She was discharged at 11:00am today and the drive home was fine.

Her pain is under control. Those bastards from pain management never showed up over the course of 2 1/2 days despite frequent bugging so Dr. Fras finally just wrote her up a prescription for some really strong form of percocet, her pain level is maintaining 6-7 while moving 4-5 when laying down.

There were some hellish days in there, but things are better, now. Please continue to pray or think of her, whichever your preference.

I'm making her eat more than she would normally, she hasn't had much of an appetite so far, which is understandable, but she has to get those nutrients to heal.

I'm sure she'll want to keep you all informed in her own way through these next weeks and months, I just thought I'd update you on that. Thanks for all your support and encouragement for the two of us thus far.

Shell's husband signing off.

[Suzy]

Next time someone asks what you might need (or if you get a chance to run to the store.) have them get Shell some ensure drinks. I had NO appetite AT ALL due to the pain meds and that helped me get the nutrients I needed.

I am so glad she if finally having her pain controlled. That is tough till it gets figured out. She is in my thoughts and we can't wait to hear about her recovery. It HAS to go smoother from now on! Best wishes, Suzy

[debbei]

I'm glad that she's home and in better control of the pain. I will be praying and thinking of you BOTH.

Take care of yourselves,

[loves to skate]

I'm glad Shell is home and feeling a little better. What an ordeal to have to go through. It is a tough enough surgery without having to deal with the incompetence of the Pain Management team. You both will definitely be in my prayers. Sally

[JoAnn5]

Make sure you 'feed' her some sort of laxative too.... I swear the constipation can be as bad as anything else in this horrendous ordeal. One good one to try is Miralax, which is a powder you mix in a drink... no taste at all and you can take one every day for as long as you need to... and i suggest that as long as she is on pain meds, she needs it!!

Still praying for y'all!
JoAnn