Post BMT +48
Day 110
Post BMT +48
The photo of Tate buried under her blankets about sums up the day. Today’s pain and nausea and in general feelings of ick reared their ugly heads in full force today. Tate had a barium study to check her esophageal motility. Drinking contrast when you are unable to eat or drink things that taste good due to nausea is a feat for a super hero. Tate got through with tears, with the help of Ruffles. The medical trauma is real and it’s cumulative. We need out of this hospital. Tate needs out of this hospital. We are now talking discharge on IV nutrition just to make this happen sooner. But it’s tough when symptoms don’t seem to be improving.
A couple geneticists came in to talk about the genetic panels that were run pre transplant. The focus was on the type of EDS that Tate has. There are many versions, and opposite of what I had thought, hers is a rare one. (Go figure.) Instead of being extra flexible, her joints are stiff. She is at risk for bleeding as her tissues are “friable” and vessels can rupture from minimal trauma. Healing wounds becomes an issue and scars form keloids and also can look like tissue paper. Joints are painful and can be damaged through high impact activities. We’ve actually seen all of this with Tate in the last year especially, but always was able to connect it with her other diseases. We’re learning some of the complications she’s experienced (like perforated ulcers) are due to the combo of behcets and this type of EDS. Actually a nightmare combination…but God willing, the Behcets is gone post transplant now. Tate is supposed to avoid contact sports and joint jarring activities. But, we trust her body to let us know what it can handle. There is an EDS clinic here that she’ll be connected with to see what this will look like for her.
The sweetheart in the photo below is Kody. He is our little buddy we met 2 1/2 years ago while sharing an infusion room. He had just turned 3 and had just been diagnosed with neuroblastoma. A cancer they found in Kodys abdomen. After years of fighting through chemo, surgeries and endless treatments both in Denver and New York, In February, Kody was declared in remission. Today his mama , Brooke, learned that he’s relapsed with a tumor behind his eye as well as 3 spots on his skull. He’s a tractor loving, dirt digging sweetie who’s best friend is his little sister, Kennedy. Brooke is a fierce prayer warrior for us and needs all of our prayers for Kody and their whole family.
We you guys!