Pain today is under control so far, though I have yet needed to stand which is always the brutal part. Richard and I will get too that after I get some IV pain relief.
In some post on one of these sites, someone was talking about receiving no aftercare from Paley which simply isn't true. I emailed him about my hurt tibia and despite being out of the country he immediately emailed me back saying he was sending his primary PA up who investigated thoroughly and positioned my leg better than the nurses. Turns out that my operation was abnormally long due to having extremely hard bones and he believe at some point in the surgery someone had my leg pressed against something which caused pressure damage. Sucks, since it actually hurts as much as my straight up broken femurs, if not a bit more for some reason but after reviewing the picture his PA sent him he said it should recover shortly. Again this is proof that even with the best things can go wrong, fortunately this seems to be minor in the grand scheme of things.
Insurance is definitively paying for all but potentially one of my medications, which is still pending but I am really happy about. Be sure to talk to your planner about this, she is very proactive about getting things done the best and cheapest way for you. If your insurance isn't good be SURE to calculate these costs into your budget, they can be substantial.
Even though it will be expensive, from noon tomorrow until sunday night I will have a home aid the whole time. Not taking chances and need to evaluate just how messed up I'll be from the tibia issue but hope to drastically drop the number of hours needed and replace them with my less professional but welcome company before too long.
The bad news for me is that this is what is that tibia injury is making standing really really hard, since basically one of my tibias is in the same condition as the femurs, the good news for all of you is that this probably won't happen unless an accident occurs during your surgery which isn't likely since the PA made it sound like my bones were very uncommonly tough and they had never seen it happen before. In other words your experience standing should be less painful.
Tony came up today and we did a full 1mm lengthening in one sitting. No pain at all and the device couldn't be easier to use. In the future this will be broken up into four sessions- However these need to be done before midnight without fail.
In retrospect about yesterday, now that I am less drugged and not in a pain induced daze, the main things to take away to enhance your experience is to:
1. Be sure you are heavily medicated by the time the epidural has worn off.
2. Ask for assistance with going to the bathroom well in advance, not much is worse than being in severe pain on the verge of exploding in your wheelchair while knowing you need to fight against your legs to sit in an uncomfortable chair that is probably poorly adjusted which will leave your legs painfully high. Seriously don't do this to yourself.
3. Ask about IV medication asap, this made me go from literally shaking and heaving from pain to able to sleep comfortably. The nurses may not recommend it so ask yourself. I was very poorly allowed to take only one percocet after the epi, where the more logical management would have saved me lots of agony and enabled me to begin lengthening yesterday.
4. Similar to point 2, be sure to ask for medication as needed. The timing is just a recommendation as nurses will note, their job is to stay ahead of the pain and not chase it. The first nurses I had didn't give me this impression but the later ones have been very explicit about this.
5. Ask for your PT(in my case richard) to help you move. My desperate move onto the commode for the first time was urgent so I had no time to ask for richard and she was not much of a help at all. The nurses dont always have a gauge on how ridiculous a request of theirs is, so when she wanted me to move from the commode to the bed I asked for Richard who hoisted me up with a rope. Later when Richard wasn't around for trip number 2 the nurse wanted me to stand but I told her to bring in another nurse which made the process a lot easier.
6. The nurses may try and give you stool softener after your first movement. I highly advise against this and (most) of the nurses will agree because after you get it out the first time, you do not want to have diarrhea or even regular bowel movements. Using the commode even twice a day will wear on you- even sitting on the commode when you're already there gets extremely painful after awhile however some nurses won't take this into consideration, or realize you had a movement, or will ask you, and if you are drugged you may lightheadedly accept assuming its good since a nurse is offering. Fortunately I thought better of this despite my mind set.
7. To summarize, the nurses really don't always know best and sometimes you do need to instruct them as per your needs, which can be hard when you aren't feeling so hot, but be wiling to abuse the call button when the going gets rough.
Hopefully these posts are helping inform some of you guys considering, or heading into LL.
