When Skip's father died, and we spent a lot of time at wakes and his funeral, I heard a lot of friends and family saying to Skip and her siblings, "sorry for your troubles," as part of their condolences. We picked up on that phrase and use it here at home as an acknowledgement of rough times.
Well, if there ever was a time to acknowledge the roughness, this is it. Skip's in a bad way. Her wound is getting worse and will require major changes in her life to get it to heal.
On Tuesday, Skip is going in for day surgery (late in the day) to have the wound cleaned up (debrided) in a more controlled environment than the clinic setting. The plastic surgeon should be able to get all the junk removed and set up the wound for healing. At that time, they'll reattach the wound vac.
She'll spend at least a few days in the hospital. Actual duration is still TBD, but I am hopeful that we can get the special bed that's been ordered delivered to our home ASAP so she can spend a short time in the hospital and then come right home to the bed. (I'll provide more details on the special mattress that promotes circulation when I get the official name of it and can look it up on the web.)
My experience with hospitals and their ability to handle the special needs of the handicapped is poor. Skip is staying at a different hospital than the one she's been in twice before. Here, I am trying my best to get her needs identified in advance in the hope that they'll be prepared.
The only other time Skip had day surgery, there was an expectation that I'd get her changed into a gown and set up on a gurney and NO ONE helped me! The surgeon's office contacted the patient advocate at the hospital where he's affiliated and I spoke with her yesterday. She is going to work with 1) surgical day care so they're prepared to provide me with assistance, 2) the in-hospital wound nurse so she can order a special mattress for Skip and 3) will prep the staff on the floor where Skip stays so they'll understand her special needs. She also reinforced that I should feel free to call her if any issues arise.
This is the lowest I've ever seen Skip. Her life has altered for the worse ... she's not out of bed for long each day. She is in constant pain. She's stressed out and that is causing her to be very weak, so often her arms and hands barely function. She anticipates that she'll be lying in bed for 6 months healing and this will have a permanently debilitating effect on her, so she'll slide downhill quickly as far as upper body strength and arm/hand functionality (I, too, worry about this). Yep, things are pretty grim in Skip's world view.
I was pretty damned cranky about things for a while, but just recently a switch clicked in my brain and I've emerged from the worst of that so I am now in a better place to provide emotional support to Skip. I hope I can keep the switch clicked. I've always been there for the physical care, but sometimes I'm just not available for the emotional care when I'm in my own dark and dismal place.
Think good thoughts about Skip and her wound on Tuesday. Wish her luck for successful surgery and her embarkation onto a healthy recovery. Oh, and wish me luck for the strength to be supportive and wonderful to Skip now in her time of greatest need.
Buying a Home While Hiding Your MS
1 day ago