The Journey of James Weston

Friday, November 4th, 2022 Just a follow up to Mike's rant and a warning to other parents looking for GI in Tampa. James getting his GJ button replaced has been an awful experience. It really shined light on two things: 1) How limited Tampa is with pediatric GI options. Crazy with Tampa bring so big! 2) How much St. Joe's Children's needs to get their act together. Between the ER and IR, it is a mess! 😢 We ended up needing to drive 4 hours away to a different hospital that would help us immediately with our emergency. It was absolutely ridiculous.  There are only two GI pediatric groups in the entire Tampa Bay area (this includes St. Pete). Here are just some of the reviews online, "the office staff is deplorable", "the service is poor", "the attitude of the office staff is disgusting", "I would not recommend anyone", "every time we need to have something done, they botch it", "nurse didn't even attempt to be nice...

Thursday, November 3rd, 2022 Mom called the IR at 8am when they opened and they confirmed that they had the right sized button. Our procedure was scheduled for 1pm at Wolfson's Children's Hospital. It was a super easy process way more efficient than anything we experienced in Tampa. While we were waiting in the waiting room to be called back James double check the paperwork and wanted to remove his medical ID band. 😂 When we went back Dad got gowned up to go into the surgery room because Mom just had her embryo transfer only 2 day before. So when they ask "are you pregnant?", you say yes. The surgeon let us know afterwards that she would only recommend a 1.2cm button and he was nowhere close to 1.5cm which is what they put on previously. She also told us that we could come back every 3 months to get the GJ button replaced because they typically don't last longer than that. We would need to get an order from our doctor though since some parents just stop seeing th...

Wednesday, November 2nd, 2022 Dad started off the morning calling the GI office of the doctor who was on-call last night. This was the doctor who spoke to the ER doctor, the doctor who told us to call his office in the morning so we could schedule with GI. Well it turns out they decided they couldn't help us and just told us to contact our GI doctor, even though it was the same group. So Dad called our GI office but it doctor wasn't in and there was no nurse practitioner or any other doctor that would help us. Dad contacted the other office again letting them know for situation and they couldn't have been more condescending or rude. So after all of this Mom did the same thing calling both offices, asking for an explanation of why the on-call doctor said he would help us and now they cannot. She also was greeted with horrible customer service getting called "Hun" by the office manager. After all of the back and forth finally we were told that our GI office had the ...

Tuesday, November 1st, 2022 Today was the craziest day ever! In the morning Mom had her embryo transfer and by the evening we were in the ER with James.  Dad and James waited in the car while Mom had her procedure. They wouldn't allow patients to take and Uber home because of the sedation. Everything went as expected and we got our first photo of the embryo. [Below] After the transfer we went out for a late breakfast and took James inside the Village Inn without his ventilator on during his 1 hour break. James did so good! It's such a huge deal! Around 7pm Mom was doing some of James' nightly care when she noticed his GJ button was sticking too far out. The balloon was deflated and had popped out through the stoma. Mom screamed for Dad and alerted him we needed to go to he hospital. Mom ended up pushing the button back in James and taped it down with gauze and medical tape. We called the GI Doctor's office to see if we should wait to come in tomorrow. Mom spoke to the o...