Thursday Genevieve had her treatment and we feel we got some clarity. The nurse Shayla spent some extra time with us talking through things. Genevieve is experiencing less pain overall. The treatments are taking away all pain except where the hardware is (and maybe a little tendinitis). Sometimes people get hardware removed but only after giving it sufficient time to settle down which could be a whole year from now. The frustrating part is that this pain could be triggering the neuropathic pain. We are going to continue the last few treatments and see if we can't get the neuropathic pain to stay away longer (we think she got about (5 hours today), and I am going to contact her foot surgeon to discuss the other pain and see if he has any solutions on how to settle it down.
I feel peace that her overall pain is at a much lower level than before she started scrambler therapy 10 days ago. The question is do we stick this out increasing at such a slow pace (8 days = 5 hours so far) even though we still need to deal with the other pain...🤷🏼♀️
After treatment we went to take an official tour at FGCU. What a beautiful campus (if you don’t mind sharing it with alligators. There was an 🐊 sunning itself by the welcome center when we arrived 😳.) The tour was about 2 hours long, on and off a shuttle with walking in between. Genevieve did really well but was very sore later. However, 2 weeks ago she would not have been able to do that. That was a good reminder how much progress she has made.
Unfortunately she paid for days with pain and swelling.
Friday she had her treatment and then we did a little shopping (the weather hasn’t been very warm and we are beyond bored) but unfortunately G was still in a lot of pain from all the walking she did on Thursday do we had to cut it short. I spoke to her foot surgeon (it’s nice to have his cell #) about where we were at with G’s progress and wanted to talk to him about the hardware pain. I assumed he would tell us we needed to give it another 6 months to a year to allow it to settle down, but to my surprise he said it could come out now, especially because it could be effecting her CRPS. We are going to see him next Friday so he can examine her and devise a plan.
The weekend- still pretty sore, but we went to the movies and saw Little Women. We went baby clothes shopping for some parents who are living her at the Ronald McDonald House with us. Their baby was born weighing 1.9 lbs and has been in the NICU for 2 months. He just reached 5 lbs. It has been a good opportunity for Genevieve and I to practice our Spanish. The dad speaks pretty good English but the mom doesn’t speak any. They asked why we were there. Genevieve wasn’t there and I tried explaining her condition in Spanglish, but considering it’s hard to explain in English I’m pretty sure they had no idea what I was trying to say.
Today I spoke with Genevieve’s foot surgeon again. I wanted to get an idea of his availability since he works on the east coast part time and west coast part time. There is the possibility that Genevieve could have surgery as early as next Monday, a week from tomorrow.
As much as we want to keep moving forward, the prospect of another surgery is terrifying. It’s pretty much the worst thing for people with CRPS. We would be happy to wait and see if the hardware pain goes away on its own if we didn’t think it was aggravating her CRPS and hindering remission.
Her surgeon is going to reach out to Genevieve’s pain specialist tomorrow about formulating a plan since special precautions need to take place with her situation. I definitely don’t want to make any rash decisions. If we are unsure about doing this surgery then we won’t do it in a week and we will take more time to consider it.
Continuing to pray for clarity and HEALING 🙏🏻
I’m ready to be home but one thing I am loving are the beautiful sunsets.
