decisions, decisions and different opinions

[timetofaceit]

Welcome to the other side, Evelyn! Trust you'll be able to both rest and begin to do more walking/sitting today!!!

[Pooka1]

Welcome to the other side, Evelyn! Trust you'll be able to both rest and begin to do more walking/sitting today!!!

Congrats to Evelyn for making it through!

Sheree, do you remember your Cobb when you were 18? Did you only have a structural T curve at that time?

[Confusedmom]

Evelyn's Medications & other details

Hi all. Evelyn is napping, so it's Rob posting again.

I read a couple of threads asking abut Evelyn's meds, and thought it might be helpful to post some notes.

As of now, 4:30 pm on Saturday (72 hours out of surgery now), Evelyn does have a pain pump of morphine ("HYDROmorphine HCI"). She has had it since coming out of surgery, and it was initially set for .25 units every ten minutes. When the pain within a few hours of surgery increased as the anesthesia wore off, they switched to .5 units every ten minutes.

On day two, she saw Dr Lenke at 7 AM and 6 PM. She was doing so well that they reduced the dose back to .25 units every twenty minutes. She also had "IV Tylenol"' which helped, but is only available within the first 24 hours. She was also on OxyContin at that point. Both are apparently quite fast acting.

After that first twenty-four hours from surgery, the process of transferring rooms, missing an oxycontin dose for three hours as they moved her, and then the twenty minute lockout setting on the morphine pain pump led to some of the pain issues she mentioned when posting earlier.

Friday morning, they introduced the Percocet, Flexeril and Valium to help. This "cocktail" got her pain down from an "8" over night from Thurs to Friday, back down to a "3" by mid-day on Friday. It's now late afternoon on Saturday, and the pain has been under control since. So good news on that front. We are trying to balance the pain management with needing her digestive system to restart (which some pain meds slow down). Evelyn is also conscious of needing to eventually get off of the pain meds, and is often asking about the balance between pain management now and getting off of them later.

Anyway, I should also note that, at least here at Barnes in St. Louis, the ortho floor is very up to speed with dealing with spinal fusion patients. They know Dr. Lenke's preferences well, which is a big help. I'm sure Evelyn will have more details on this later, but based on our experience, the twenty four hours in intensive care or critical care after surgery is more challenging, and probably more critical for family members to be aware of the overall game plan and "advocate" for the plan. Both on general, but with pain management in particular.

The benefit of this post op area is the one-on-one nursing care. The downside is that everyone there does not necessaily know Dr. Lenke's post op preferences as well as the ortho floor. Our first nurse ("Herman") and nurse practitioner ("Nicole") were both very good as well as friendly and extremely attentive. But there were only three overnight patients in the post op, or "critical care area" ("CCA" on the third floor), so they were both great at working with us and checking with Dr. Lenke's team as needed.

The next day in the CCA, it was much more hectic, with patients coming and going and few empty beds in this Third floor area. The day time nurse practitioner had a lot to oversee, and was therefore not nearly as helpful, and much less visible than Nicole the night prior. It led to delays getting moved up to the ortho floor, some of the pain management issues with the doses, and the mistaken instruction to pull Evelyn's foley catheter (which Evelyn's mom and I prevented, and Dr Lenke confirmed when he came by later would have been two days too early for removing).

So moral of the story is to know Dr Lenke's plan for the first twenty four hours well, have family members in the loop so they can advocate for this plan and watch for steps that seem out of line, while staying flexible so the nursing team can adjust and personalize steps as needed.

So as we hang out in the Ortho unit with the NCAA basketball tournament continuing on TV for a third day, I should note that I had Evelyn fill out a bracket before surgey as a distraction. She picked St. Louis to win it all (perhaps appropriately?) and they are still in the running. Evelyn is tied for third in this particular bracket contest. It is nice to have distractions as she continues to get better. Most importantly, I'm happy to share that she is doing really well and still seems to be on or ahead of schedule with her recovery (and she has slept for the last ninety minutes!).

Evelyn may feel like posting more later, but I though this would be a good spot to keep some notes. Hope it's useful to others, too. I know this forum has been hugely helpful to her Cheers. Rob Twitchell

[jrnyc]

thanks so much Rob...
good to hear her pain is under control now and that
she is getting some sleep....
hope you can sleep at some point, too...

best wishes for her continued recovery...
jess

[TwinmomTN]

Thank you so much Rob for the information and your experience there at the hospital. This will be greatly beneficial to those of us following soon behind Evelyn. I will definitely have my husband read your posts. So glad she continues to improve and is ahead of schedule! Glad the tournament is a distraction to you guys.

[golfnut]

Rob,
Thanks so much for updating all of us. I met Evelyn in March last year in Dr. Lenke's office when I was there for my 10 week post-op. I knew that she would do well. I know she worked hard to physically prepare for this surgery. I am sure you are happy to have the NCAA games to watch to help pass the time. Give her my best wishes for a smooth recovery.

[JenniferG]

Great commentary, very useful, for those following in your footsteps. Thanks for taking the time to let us know. These details, no matter how small they may seem, are devoured by those who're still facing this surgery.

Glad to hear Evelyn's on target or even better and that her pain's better controlled now - and that she's getting some sleep!

[djkinkead]

Glad to hear you are on the other side, Evelyn. Rob, thanks for posting.

Don't worry about getting off the meds right now....concentrate on getting the "output" going now.

Also, you may find you are NOT hungry at all...it will kick in, but not for several days. I remember having to force myself to eat the first few days. It got better.

Remember, you are in healing mode now. It's okay to rest, it's okay to take the drugs that will help you rest.

Best wishes and I will continue to say prayers for you and Rob.

[Kurt]

same as thread name

Hi Everyone,

I'm 50 years old, male and live in Seattle. I've seen about 4 or 5 bone doctors over the years, one of which, Dr. Krengel, I saw the most, but he ended up at Children's Hospital so I can't see him any more. My pain has increased as has my curvature. March 20, 2012 I had my first visit with Dr. Hanscom at Swedish Hospital in Seattle. He had a Dr. Bhangoo team with him for my visit. They talked about surgery that approaches from the side instead of the rear, and gave me an informational pamphlet from a company called NuVasive.

I'm not sure what to make of either doctor at this point. They seemed a bit too 'business as usual'. I kind of felt like I was in a retail store when they handed me the pamphlet. Still, the fact that research is being done is good news.

Has anyone in this forum heard of either this type of surgery or this company?

Another thing is that they took x-rays after the appointment, so I need to call about the results. This seems curious. Dr. Krengel usually took x-rays first so we could see where I'm at currently.

As of 9/10 (September 2010) my curve was 87 lumbar and 70 thoracic.

[Lorraine 1966]

HI Kurt, I have never heard of that "Nu Vasive" but then others on here probably have. I am more that tried and true type of person, I would not like a surgeon operating on me maybe with something that is just a little new. I did have the best surgery they could give me in 1966 and it had been tried before. Just want you to be a little careful, I myself would have no problems with surgery with a scoliosis specialist, I just felt a little doubtful when I read your post. But as I said someone on here may have heard of it and it may be brilliant. I do hope that you are very soon looked after as your curves must be causing you pain.

Rob I have read Evelyns story and I wish you both the absolute best. How kind of you to take the time to keep all here up to date.

All the very best
Lorraine.

[jrnyc]

Kurt, i sent you a private message...
Nuvasive sounds like it is used for minimally invasive spine surgery...

jess

[titaniumed]

Hi Kurt

There are people here that have had XLIF’s, from the side.....you might start a new thread or use search.

I would get digital copies of your x-rays, they are your property.

87 is a huge Lumbar curve.....how is your pain?

Ed

[golfnut]

Evelyn,
We haven't heard from you lately. I was just wondering how you are getting along. The first month is the toughest!

[Confusedmom]

Hi Karen,
I just responded on another thread. I am having trouble sitting, which makes using the laptop harder. I am posting most of my messages from my iPhone lying flat on my back. I'm doing okay, though. Thanks for checking in!

Best,
Evelyn

[hasteffen]

road to recovery

Hi Evelyn,
I have been thinking about you. I hope that you are healing well. I know it is probably a really tough time right now. Please email me when you are able. How are your kids dealing/ coping? Take care and God Bless!
heidi