Kate Taylor

First post: Dec 17, 2022 Latest post: Apr 30, 2023
It started with stomach aches.  Moved on to  daily migraines.  Add in continuous nausea.  Rinse and repeat.  This was the first 12 years of Kate's life.  In spite of all that, Kate thrived.   She became an amazing pianist, volleyball player, academic and generous, loving young woman.

Around the age of 12, her health started to turn.  It was little things at first.  She started being unable to tolerate exercise in the heat.  Her hands and feet would turn purple.  She would get stars in her vision every time she stood up.  After a lot of research and waiting for doctor appointments, she was diagnosed with POTS (Postural orthostatic tachycardia syndrome) and Dysautonomia.  Over the years her symptoms got worse and her abdominal pain and nausea returned with a vengeance. COVID hit and we had a very hard time accessing healthcare.  Again, rinse and repeat.

In the spring of this year, our family decided to relocate back to the Arizona to be closer to family and see if we could find better help for Kate.  I wish that I could say that it has been an easy road since then, but it has not.  Since June, Kate is on her 7th hospital stay and has spent more than half of those months inside a hospital room.  Now, finally, we are starting to get some answers.

With the intestinal motility issues, pain and nausea over the years progressing, Kate's food intake has been seriously restricted.  It got to the point where anything that she tried to eat came back up shortly there after.   She tried 100% liquid diets, every elimination diet under the sun, spacing out meals, etc, all to no avail.  The system started failing her.  They saw a very thin 15 year old girl and diagnosed an eating disorder, all without further tests to determine exactly what was going on in her system.  We finally advocated for an upper GI study and a CT, which showed that she has SMA syndrome (Superior mesenteric artery syndrome).  In short, because of extreme weight loss, it causes a compression of the small intestine and creates a blockage or severe constriction of the bowels that doesn't allow food to pass.  They treat this with a feeding tube that bypasses the restricted area.  It should take about 2 months to heal.  3 months later she is thinner and more malnurished than when she started the treatment.  

We still need to discover what is causing the motility issues, abdominal pain and nausea as well as treat the SMA affectively so that she can gain the weight that she desperately needs.  This hospital stay we have finally started  making some progress on all of those fronts.  She is being treated with TPN, which is nutrition directly into the bloodstream.  It is not a long term solution but it does give her some much needed help right now.  We are working on finding a formula and rate that her body will accept through her intestines so that hopefully she won't have to be on TPN for long. (It is a lifesaver but can be very difficult on the body).  She had advanced motility studies last week that found her lower intestines don't work properly.  She is on a new combination of medications that will hopefully help that portion of her system restart properly. She is getting a nerve block in her abdominal area tomorrow that we are all hoping will give her the pain relief that she so desperately needs.  We also believe the block will help diagnose another component of her health issues.  

This has been a very long journey thus far and we still have a long way to go. We are so grateful to all of our friends and family who have supported Kate, Glenn, Kory and myself during this time.  2023 is going to be an amazing year of answers and healing.  

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