07/13/2024
July 4, 2024
Tiff, Chad and I are headed back to Hopkins. We will followup with orthopedics, pain, urology with a new appt with a pediatric gastro surgeon. No followup with genetics or cardiology this go around as her heart is stable. We will rescan in 6 months for that. But Tiff has been having what we thought were urology issues stomach pain, nausea, bloating, hurting after urination, yeast infections etc.
Well before we left for Hopkins Tiff had a CT scan done as she was having the above issues with urinary that we couldn’t figure out. So the gynecologist/urologist sent her for a CT scan to see what was going on. We’ll come to find out while her urinary system seem to have no problems they came upon another finding by accident. They discovered that she has gastrointestinal malroatation without Volvulus. In short she has lost connection tissue in her abdomen which holds her large and small intestines in place and now they look like sphagetti all tangled and twisted. The only way to correct it is through surgery to put them back in place. So after they found this I contacted her genetics Dr. at Hopkins and they immediately got us in with a surgeon and she will have surgery more then likely end of August to correct this. Surgery will be at Hopkins.
Day 1 Pain Dr. Sullaman
Tiffany’s overall pain is not controlled with current medication regiment so he has changed some of her meds and we hope that will help until surgery July 2025
Dr. Sponseller orthopedic now has tiff in feet and ankle braces, back brace, and knees braces to try and keep everything braced and relief from pain. Her lower body continues to torsion her right side is 70% rotated and her left side is 50%. Her feet continue to be a bad problem as well and will also have to be corrected in the surgery. Her pre-op and torsion scans will be done May 2025 so they will be current right before surgery. She will also have to followup with genetics and cardiology to have repeat echo and clearance from cardiology for surgery. Surgery is still scheduled for July 2025
Day 2 Urology
Tiff saw urology who is trying to get to the bottom of her continued yeast infections as well as her urinary pain. Ultra sound, bloodwork, and x-ray were completed but thinks that these things are being caused by the intestinal issue. Waiting test results from blood and scans.
Day 3 Gastro Pediatric Surgeon
Tiff saw surgeon due to a new finding with her intestines. He ordered an upper GI which confirmed that she does have malrotation and will have to have surgery. So her intestines are a mess they are going to try and do the surgery with robots but if there is a lot of scar tissue they may have to open her up and they will remove her appendix as well because is it up under her breast bone and has been causing her some trouble. They have to repositions both large and small intestines and hold them in place somehow until they kinda adhere to her abdomen with her own bodies scar tissue. We are still waiting on all the specifics from the surgeon I keep you posted. It’s called the Ladds procedure. Surgery will be end of August so we will be headed back to Hopkins.
