It’s hard to formulate what to say in a post when your emotions change from minute to minute. I try to get my head straight from the constant ups and downs before I write anything which means I usually just end up not writing anything at all. 😫Abri spent 5 days in the ICU after the intrathecal catheter in her spine was placed. The first 2 days she would not wake up (even with trap squeezes which huuuuuurt) and slept non stop. They kept turning down the amount of pain med in the cath but she still wouldn’t wake so by the 2nd day they were concerned and turned it off. Over the next few hours she slowly woke up and the extreme pain came back (and a super fun CSF leak headache). They then turned it back on and she was able to stay awake and the pain went down. This proved that it is definitely nerve pain and now we have a way to help her! They removed this temporary one and will place a permanent catheter in her spine that runs to a port in her stomach that will deliver constant nerve pain relief. It won’t stop the pain completely but it will hopefully dull it enough for her to function again. Unfortunately we have to wait at least another week before they can perform the surgery so she is once again in excruciating pain with no pain control. Since we are not getting any pain relief in the hospital anyway and for several other reasons we have decided to come home until the surgery. This will probably happen tomorrow so please pray for Abri to handle being home without any pain meds, for her strength to come back (she is so weak she passes out just standing up), for me to be able to keep her as comfortable and safe as possible, for the surgery to get scheduled ASAP and for it to finally give her the relief she desperately needs. 🙏🏻