We took her to the hospital a few days later for abdominal pain again.  This time she was admitted and Dr. C was the attending. She got the pain under control and sent Rachel home. Rachel was admitted later because she was vomiting NG feeds and still had pain.  This time Dr. D was the attending. He did another endoscopy, took two biopsies from the esophagus which game back negative for EOE so her declared her healthy and he would not accept the diagnosis of EC. She was once again sent home.

We didn’t see Dr. A again because he just didn’t seem interested in treating Rachel. We sent in a request to see Dr. E. We went and saw him in March and because Rachel was still losing weight and vomiting NG feeds he put her in the hospital for an NJ and monitoring for a couple of days. NJ feeds only lasts 4 days at 40 ml/hr and she was either vomiting or dry heaving. The decision was made to place a PICC and do TPN. Dr. E wanted to get Rachel’s nutrition up. She went through two PICCs between April and the middle of June when a port was placed.  In May, Rachel came down with a fever so we took her to the ER thinking she had a PICC line infection.  By the time, we got to the ED her temperature was 104 and she was having numbness in her left arm and left leg. Neurology came and evaluated her and couldn’t come up with a diagnosis for what happened.  They didn’t do an MRI or CT scan. They sent her home with PT and OT.  Rachel was also diagnosed with gastroparesis in June with only 6% of the stomach content emptying in an hour.  This was at the same time the port was placed.

Because of blood pressure dropping and heart rate increasing upon standing, she was sent to Dr. F at the adult hospital for POTS testing.  The Tilt Table Test shows Rachel has an orthostatic intolerance. Dr. F says it could be because of all Rachel’s GI issues.

Rachel did great over the summer and then in September, she got an infection in her line. We were already having an appointment with Dr. E, so we went to see him before the hospital so we didn’t have to go through the ED. She fainted in his office. She was admitted for a week and given antibiotics and sent home with antibiotics.

The first weekend in October, her ability to empty her bladder decreased. After not being able to pee for 12 hours, I took her to the ED. They cathed her and then sent her home thinking her bladder was too full and that was why she couldn’t pee.  She ended up back in the ED the next day, after 15 hours of not peeing. They cathed her and then admitted her.  She saw the attending GI doctor who was Dr. G and also a urology resident.  Dr. G didn’t quite understand why GI was seeing Rachel. I asked if this could be related to dysautonomia. Dr. G referred her to Dr. H at the adult hospital.  Urology did an MRI of her lower spine and no pinched nerves were found. They sent her home to self cath and then to come back in three weeks for a CMG test.

According to urology, Rachel has a neurogenic non-neurogenic bladder which we don’t understand.  The day, October 30, 2015, of her CMG she also had an ultrasound of her kidneys; that came back clean.  On the way home, she developed a fever. After getting home, she fainted. We brought her back to ED where she was admitted for a line infection. This time Dr. D had the port pulled, October 31st. Rachel asked him if he would place another line, later in the week, and she says he said yes. I thought I had heard that too.  The surgeon felt that Rachel needed to be in PICU but the anithesiologist  said she was fine to go back to CMU. After the surgery and back on CMU, she went septic and sent to the PICU.  They were able to get the septic shock under control without having to use pressers.  She was sent back up to CMU knowing she was developing a cough. Within 3 hours, she was back down in PICU on a bi-pap machine.

Once she was better and sent to CMU on 3 liters of oxygen, things started not going well.  Dr. D refused to put in a new central line and demanded she do NJ feeds again, Wednesday November 4th. He wanted to collect data on her to find out if she really couldn’t tolerate feeds. The first night she was up after 4 hours on feeds, at 5 ml/hr, dry heaving. Dr. D quickly learned that she wouldn’t be able to receive her nutrition from the NJ tube and so had a PICC line placed until she was able to tolerate feeds, but she wasn’t going home with the PICC. He was adamant about that. The night the NJ tube was placed, the 5th, we learned from a tech that Rachel would have 24 hours a day, every day, monitoring. This meaning the tech would either sit in the room or outside the opened door.  Needless to say, we were mad. We were able to have a meeting with Dr. D and Dr. E and agreed she could sit at the nurses station with the door cracked open and watch Rachel. Dr. E told Rachel he would do everything possible to get her out of the hospital by the 13th.  (That didn’t happen?) Then we also found out from the tech, the next night, that Dr. D talked with urology to make a plan for Rachel to get off the catheter.  I felt like that was an infringement on our privacy and that he should have come to us first. Every time Rachel felt like vomiting, we rang the call button.  On Saturday the 7th, I did get upset with the resident because we just wanted to go home and we have dealt with central lines for over 6th months and knew the risks, but we were willing to take those risks. It started out as a good conversation, the I felt like he wasn’t listening, so I got testy. I believe it was Sunday afternoon, when she actually started vomiting up the formula.

By this time Dr. G was the attending. The resident, fellow, and Dr. G didn’t believe she could be vomiting the feeds it had to be stomach juice. Her vomiting continued and got more frequent.

We requested a meeting with the “team” on Monday because we weren’t getting any where and felt that the doctors were not talking to each other or to us.  The meeting was set for Tuesday.  This is when we found out that the plan was to send Rachel to NTU to feeding rehab. We were opposed to that. We didn’t understand then and still don’t understand why she can’t go home with a central line. Rachel had already been in the hospital 11 days and wanted to go home.  We tried to compromise and asked for two weeks at home, coming every day if need be back to the hospital so they could check the line, and then bring her back.  The team refused.  They gave us the choice of pulling her PICC and us taking her home with no way of getting nutrition or going to feeding rehab.   Dr. E even told us a story of a girl he sent to Texas for help and she was taken away from her parents. He was basically telling us to be careful or else they would take Rachel away from us. They wouldn’t even let her stay on the third floor with nurses and techs that she knows.

Rachel was allowed to go see Dr. H on Tuesday the 10th, where she ordered blood tests and a few other tests to be done, checking for autoimmune diseases. She believes that Rachel has a greater than 50% chance of having an autoimmune disorder.

The other team of doctors believe that Rachel has somatic system disorder.  They think she is doing this to herself.  She isn’t. She wants to eat and she tries to at home and just vomits it up and deals with the consequence of eating something for a few days, pain and migraines. Every symptom she has relates back to the vagus nerve being damaged.

We feel like we left her in jail.  They told us it would be 2-3 weeks in there.  We told them only two and doctor Dr. E agreed.  She has a strict schedule with feeding therapy 5 times a day, PT, OT, and behavioral therapy.  We have limited access to her, only 4 hours a night. We feel like we have lost 90% of our parental rights. Rachel doesn’t feel like she is listened to or that her feelings are validated. Her night nurse the second night, said she had to watch Rachel cath and said Rachel couldn’t lower her feeds.  I did call the charge nurse and things got straightened out. She didn’t wake Rachel up, as per scheduled, to cath in the middle of the night and to give her her Zofran.  Rachel woke up at 4:30, November 13, to an upset stomach; went to the bathroom with runny stools and vomiting.  When she told her nurse, her nurse was upset at her for not waking up asking for the Zofran so she wouldn’t vomit.

She feels like they are shoving food in her face and that she has to eat it. Of course if you are going to put food in front of someone they will eat it.  She also feels like she is being forced and that it is not at her own pace.  They also don’t believe she is vomiting up formula because there’s no way it could be in her stomach. She can taste the formula. Her intestines could be backed up into her stomach. This is hurting her esophagus. The NJ tube is rubbing against her nose. She doesn’t do well in new situations, she is shy and introverted.

We are made to see a social worker every day before seeing Rachel and also one of the doctors. We don’t feel like the social worker is necessary. There really still is no definite plan. They just keep saying they will look at all the data after two weeks and decide where to go from there.  She is tired of the hospital.  She is more likely to get a PICC line infection being in the hospital. She does better when surrounded by her family and friends. They have even limited our time with her on Saturdays and Sundays.