So I've come to terms that this PAO thing is inevitable. I decide to tackle it head on and look for some lessons to take away from this experience along the way. So far:
1) My husband is an absolute Saint! I've always known he's a good guy, and I never doubted his abilities, but he has come through for me at an unimaginable level. I will be forever grateful (and fortunately I also have the power of the delete key ;p)
2) It is okay for me to give up some control. Actually I've had to give up all control, and things are still good.
3) There are many, many good people in this world and I'm grateful for all the wonderful people who have taken the time to send me an email or to tell me they're thinking of me. I was amazed at the number of people who wanted to know the exact time of my surgery so they can send out positive vibes. Purely humbling.
4) I already knew, but am more than ever grateful for the fabulous team of family and friends around me.
5) A negative thought can not exist at the same time of a positive thought. So if I have feelings of uncertainty or fear, I just think of a happy moment in my life to over-ride the negative. This tool has worked very well for me throughout this whole process.
Here's a re-cap of one very long week:
D-Day, July 19:
Surgery is on a Saturday, which is very cool since I'm the only one at the hospital needing to be prepped. I decide to conquer my fear of needles, having a picture of my son in hand with every poke & prick helps get me through (I fainted during my scope when they put the IV in.) Surgery lasts about 4 hours, I have both a scope & PAO. Things are fuzzy, but ultimately I'm taken to my room on the Peds floor (where my doc sends his patients), I have a PCA machine with morphine, a catheter, and am connected to a CPM machine to prevenet stiffness. I stayed in this state for 48 hours.
2 days Post Op:
Now the hard part starts. I'm awaken to have my dressing changed, catheter removed, PCA taken away, and PT is to show me how to get out of bed--BIG DAY! Problem is that the oral meds make me itch something fierce, so we spend the next couple days trying to manage the nurses to help me with my medication. This is one of the biggest lessons, frustrations, and surprises: You must take control of your own pain regime. The staff clearly did not know, in some cases didn't care, what meds I was taking or when I should have them. Fortunately my husband was a great record keeper and a bit of a bull dog.
This day also brought me the greatest pain I have ever felt in my entire life, which was completely avoidable. PT came in and as she was holding my leg with one hand and trying to put the CPM machine under the bed with the other hand, she dropped my leg. I'm talking hyperventilating, passing out kind of pain where you're not crying but your eyes are streaming tears and you're in shock over what just happened. In the end she was able to show me how to make it to the bathroom, but we cut it short and she vowed to be back the next day. I vowed to be out of bed before she had a chance to touch my leg again.
I also got to eat my first meal in 3 days, and was able to get up 4 times on my own.
As for getting around, I'll be using crutches (not a walker as I had thought.) I'm only to put the weight of my operated leg on the floor. So one step goes: R crutch, L crutch, schooch R foot forward, step through with L; repeat until I get where I need to be.
4 days Post-op:
Received my discharge papers. "Walked" from the car to the bedroom, and slept in my own bed for the 1st time in 4 nights. I have a nice set up with a recliner in between my bed & bathroom, that allows me to change positions and to keep from getting too sore. Also, have hourly exercises to work on.
5 days Post-op:
Got to SHOWER! What a relief, and a bit of a challenge but totally worth it! I also find that I'm schooching less with my operated leg and able to start taking something that looks more like a step.
6 days Post-op:
Pain meds are lasting longer. Had to venture out to have blood drawn since I'm on Coumadin, so that means I had to get dressed, and walk to the car. Was able to get myself out of the CPM machine and out of bed on my own.
7 days Post-op:
Still taking it slow, but pain is being managed. Was able to get myself back into bed & into the CPM machine on my own at 3am. For now I need to rest, take my meds & vitamins, do my exercises, and continue to ice--I can handle that. I just realized I haven't changed a diaper or had to decide what's for dinner in a whole week!?!
Over all my week has gone much better than expected. My husband missed his calling as a nurse. He's great at tracking my meds, making sure I'm doing my exercises, and feeding me. My mom & mother-in-law have been absolute angels helping with my son. At this point for my husband it's kind of been like bringing a new baby home, even though I'm trying to be as cooperative as possible and I can get myself to & from the bathroom =)