1 Year + 157
1 Year +157
This past week was pretty emotionally draining. On the heels of the new kidney news and worsening pain, there was lots of discussion surrounding Tate’s nutrition status (or lack of.) Tuesday’s GI appointment started with the news that Tate would be admitted to re-start TPN (total parenteral nutrition.) For those new to our journey, TPN is fat and calories that are given to Tate through her central line….IV style. She was on this as her main source of nutrition for 15 months. She just got off it the end of May and since has been on IV fluids, formula and oral intake. Being on TPN comes with its own risks and challenges and definitely impacts travel and flexibility with daily living. It’s a huge step backwards after working so hard to get off it. The addition of the big immunosuppressant meds increases infection risk which would make getting rid of her central line really great. But it feels like we just keep moving away from that.
There was lots of disappointed and frustrated tears. It’s thought Tate is in a hyper metabolic state driven by the high levels of inflammation going on as her body continues to fight against itself. It isn’t so much based on weight, although Tate has lost too much too fast for her teams liking. But…we bought two weeks to see if increasing formula to 10-12 hrs/day will sustain her. They have been endlessly patient as we are constantly working through the emotional challenges that come with tube feeding, iv fluids, nausea, stomach pain and huge amounts of past steroid use and what that does to a body. It’s tough! We absolutely adore Tate’s GI Dr and her dieticians. Their care is so evident as the disappointment where things are sitting is felt by not only Tate and us, but also her team. We all want the same thing and everyone is working hard (esp. Tate) to get things going in the right direction.
Amidst other appointments and therapies this week, we saw Bone Marrow Transplant on Thursday. Currently BMT isn’t driving care as Tate’s other specialists are taking lead. But Dr. Eissa was able to spend time with us in a less medical capacity and provide further explanation to what the entire team believes is happening. What was both reassuring but also hard to hear is that everyone now agrees with what Tatums body is doing without an understanding of why or a protocol to move forward. As a super simplistic explanation, Tates new bone marrow is attacking her body and Tatum’s “old”non marrow tissues are attacking themselves. It’s like double autoimmune without the understanding of how or why. There have been discussions surrounding this since October but to hear it said out loud as a statement still feels like a punch in the gut. It shouldn’t be happening. It’s worriesome as it’s difficult to control what you can’t understand. So we try new meds and treatments with the hope that not only labs improve but especially that pain does. And most importantly, that further damage and deterioration is controlled. The Dr’s are working on another care conference to convene brilliant minds and come up with a plan.
G Sandy came in Thursday night for a few days. Tate, GS & I went to the Brent’s Place Block Party & reunion on Saturday. It was fun to spend a few hours and see some sweet friends. Brent’s Place is where we had an apartment from April to the end of July allowing Tate to be outpatient yet just minutes from the hospital. After 5 months inpatient, BP gave us a safe, clean, simplified place to live with a 5 minute commute to her daily appointments. We will forever be grateful for the kindness, love & generosity shown to us there. It’s sn amazing organization with lots of options to be support if you’re inclined!
This week we keep stepping forward with appointments and meds and are hoping to make enough progress with feeds to avoid an admission for TPN. Thanks for all the love and support and prayers. We are so grateful for Tate’s entire Tribe!