1 Year + 168
1 Year +168
IVIG yesterday and today was blessedly uneventful and gave us a chance to see some of our favorite faces. The North CCBD team is a huge gift in our lives. Today has been a sad day. But as I look hard for the positives, I can say I am so grateful for every member of Tate’s team…from the CHC staff and Dr’s to her outpatient therapists, Meg and Abby, to the contacts we’ve made with various organizations. There are so many beautiful people in this world.
Tagged onto IVIG yesterday was a visit from Tate’s pain Dr. Lovingly called “Dr. ZB.” He is so patient and kind. There were tears as we talked through the frustrations and limitations of where we’re at managing increasing pain. We’re running out of long term options. Without going into the nitty gritty of receptor and withdrawals, neurological effects and opioid rotation, we’re getting closer to accepting the repeated (and encouraged) offer of a medport implantable pain pump. It doesn’t have to be permanent, but can be long term. Another try at a knee ablation is on the table along with steroids to try to reduce the inflammation in Tate’s ankles. The reality of pain meds and implanted pumps at age 16 means no license. No driving. Her simple dream of “Driving to Target” isn’t currently attainable. These are the big things when you’ve already lost so much.
The care conference outcome was disappointing to say the very least. The focus was heavy on nutrition as rheumatology wasn’t able to be there. TPN is currently off the table as formula is holding Tate’s weight steady and the risks of refeeding syndrome are high. We can move more slowly with the formula. That’s a positive. Emails are going and Special Care will be more involved moving forward to bring in more providers to work on the physiology of what’s going on. In addition to the auto inflammatory issues, and other issues, Tate has a disease (dx through a genetic panel) found right before transplant. Classic Ehlers Danlos. A connective tissue disease that is progressive. We don’t focus much on this one, but it’s potentially causing bigger problems than we thought. So it’ll likely be getting more attention.
So, today feels heavy. This time of year is difficult. This year maybe more than some. This is supposed to be the new life. Finding a normalcy in this has been difficult. For both my girls. As your healthy kiddos head off to school, say an extra prayer of thanks for the normalcy that is so often taken for granted.