January 20, 2024
1 year +332
It was a busy week getting through appointments and labs getting ready for surgery next week. Tate had a relatively decent week just being grateful to be home! It was busy with multiple runs into various hospital sites for labs, telehealth and in person appointments and therapies. The normal things are still a daily struggle, but we found joy in lots of little things. A highlight was that Tate got her hair done by my dear friend, Mary.
We ended the week yesterday with rheumatology. Labs yesterday show that Tates IG levels are low. This, coupled with increased CNS lupus symptoms since stopping IVIG in September, means we’ll restart once she gets through surgery. This is the 2 day a month 8 hour long infusions. She started these when she was 9. The routine is familiar and we love the staff that cares for Tate. The days are long but the benefits far outweigh the negatives at this point in Tates journey.
Blood cultures are pending and we know will be negative. This is just a precaution with Tates history and heading into surgery. Tate’s body was trying to run a fever twice this last week which always causes us to hold our breath a bit. We have just a few more days to keep things together so surgery is a go.
Next week there’s appointments Monday and Tuesday, nurse visit, one last set of labs, PT and OT, a power wheel delivery and set up for her chair (finally) and then we head into surgery on Wednesday. Busy couple days!
I received a call from Tate’s pain Dr. Yesterday with a little more information. This surgery will likely be pretty rough initially. I assumed the pump would cover her surgical pain…not the case. She’ll be on a PCA (external pain pump) as well as a ketamine drip for a few days. Also a constant Benadryl infusion to combat the morphine itching (it’s pretty miserable from past experience.) Once she gets through the surgical pain, they’ll calibrate the pump that will administer both constant morphine and an anesthetic directly into Tate’s spine. So a bit more involved and a longer stay than we were anticipating. Tatum is VERY nervous. We all have anxiety attached to this but trust this is the best option. It’s a little different mindset knowing this is not fixing something but leaving hardware in her body to treat progressive disease. We have so much hanging on this so it comes with a lot of emotion. We don’t know the outcome but trust the one who does.