Sarah’s Journey to Philadelphia GI

On January 20th Sarah was admitted to St. Joseph Children’s Hospital for gastric distention and she was not tolerating her J-tube feedings. We were in St Joes for a month and ended up being sent home on TPN (IV food) as they stated after their testing that she had gastroparesis. We were discharged on Feb. 22nd and they said that it  may take her a couple weeks and then should be able to slowly start feeding her formula through her tube again. We were only home 2 weeks and she spiked a 103 fever on the evening of 3/8. On 3/9 we were admitted directly from her Drs office as her temp wasn’t coming down and she was pale and lethargic. The morning of 3/10 is the day I almost lost her!

That morning the Dr came in her hospital room and said she tested positive for 2 bacteria in her mediport and that she had a line infection. Before the Dr walked out Sarah started dropping her oxygen levels and the called a “Rapid Response” on Sarah which then 3 Drs and 6 different nurses came running in. They had her out of the room in 5 min and were rushing her to ICU.  Before the Pedi ICU Dr walked out and stopped and asked me if Sarah was a Full Code (CPR, Breathing Tube, Shock/meds) and I said YES! Thankfully she didn’t need resuscitation but the next 3 days was touch and go as she had gone into Septic Shock from her port infection and had to be on blood pressure medication for 2 days as her BP was 60/20.

Sarah is still unable to tolerate even water through her feeding tube and after an 1hr she becomes very distended in her belly and cries. They have done colonoscopy, endoscopy, but are unable to view her small bowel or sigmoid colon. We have run out of options at St Joes so her GI is going to transfer her to Children’s Hospital of Philadelphia, as they have a whole GI Motility Hospital and are best in the US for GI complex issues. We are unsure if her insurance will cover all of her admit as well as I will have to be with Sarah and we have no idea how long her stay will be. I will have to get an Airbnb or discount hotel up there as well as food and gas driving back and forth to hospital. I am truly not sure how long we will have  I be there but I won’t give up hope of finding an answer so she can feed again! The alternative is going home on long term TPN(IV feed) where she will either contract her last port infection and pass away from not being strong enough to fight it off this time, or she will have much shorter life span due to liver and kidney damage and failure eventually due to how harsh constant TPN is on your organs. I feel in my heart God is not done with Sarah yet and this trip will be worth all the stress  as it will mean a better quality of life for our Sarah and longer life! Thank you all for letting me share her story and for your support on our next big journey! God bless!