Let’s see, when we last spoke, we were hoping for a good weekend. By Friday afternoon, it became clear to us that though Daphne was still vomiting, the virus was no longer to blame. It was my old nemesis, reflux. I called the Nephrology Fellow on Friday afternoon (again), and sheepishly asked if maybe we could get our GI involved. Stupid me. I should have had him paged the moment we got to the ER, but we were so concerned about dehydration and kidneys, that I didn’t think of it. Another lesson learned.
By the end of the day on Friday, the answering service at the hospital was doing crazy things for me, like trying to connect to the doctors in real time instead of taking messages. Crazy things they do to get rid of pesky persistent parents. The GI called me in the evening, and upon hearing the whole story, said “You know, at this point, I have to wonder whether there is something else going on. She has been on Prevacid for too long to still be so sensitive. We can barely keep her reflux at bay on such a high dose. I am going to speak with Nephro, but I want to look into her with a camera before we think about supplemental feeding.”
The weekend continued the same way. D ate some, threw up some, refluxed the entire time. We could smell acid in her breath. She woke up a couple of times with vomit in her crib. By Sunday, I emailed GI and Nephro letting them know the state of affairs, and asking if I should make appointments to see them both on Tuesday, when we were supposed to repeat labs.
Nephro emailed me back, saying he and GI had already talked, and he thought we should coordinate a multi-specialist appointment, also including the Dietitian. My thoughts were “that would be amazing, but what are the chances we can accomplish that outpatient?” After much back and forth, we got it done. The appointment was made directly through Nephro’s assistant, and GI, who works in the same office but was completely booked, agreed to pop in so we could have a group discussion.
It was magnificent moment of medical coordination, helped by the fact that D was in a stellar mood and feeling great. She gained back some of the weight she lost last week, staying well within her 21lb plateau. We chatted with Nephro and the Dietitian first, poured over all her chemistry numbers, then GI came in. He wants us to schedule an endoscopy in the next week or two. His gut (Ha!) feeling is that what may be behind the reflux is, in fact, Eosinophilic Esophagitis , a condition that was thought to be very rare, but in reality is more and more common. The symptoms pretty much define Daphne:
- Poor weight gain (failure to thrive)
- Refusal to eat
- Vomiting often occurring with meals
- Heartburn
- Difficulty swallowing (dysphagia)
- Pain or discomfort with swallowing (odynophagia)
- Food becoming lodged within the esophagus (food impaction)
Of course, there is always the risk that the endoscopy will show a completely unremarkable upper GI tract, and her issues fall within the muddy area of poorly understood long-term effects of prematurity. We shall see.
Toward the end of the appointment, the medical students showed up, rushing after a mandatory review session. At that point, we had seven grown-ups in the small room. Count them: me and Z, Nephro, GI, Dietitian and the two med students. D was incredibly happy and charming, so much so that everyone agreed she was doing well enough we could skip labs and go home.
In the meantime, D’s CPSE evaluations are being scheduled. She will have a psychological and educational eval, as well as PT and OT. They have not requested a speech eval. Last week, as she was in the hospital, CPSE contacted me to let me know the district’s Doctor will be involved in D’s case, since her main issue is being medically fragile.
Juggling all the evaluations and the endoscopy are giving me reflux at the moment.
Let’s see, when we last spoke, we were hoping for a good weekend. By Friday afternoon, it became clear to us that though Daphne was still vomiting, the virus was no longer to blame. It was my old nemesis, reflux. I called the Nephrology Fellow on Friday afternoon (again), and sheepishly asked if maybe we could get our GI involved. Stupid me. I should have had him paged the moment we got to the ER, but we were so concerned about dehydration and kidneys, that I didn’t think of it. Another lesson learned.
By the end of the day on Friday, the answering service at the hospital was doing crazy things for me, like trying to connect to the doctors in real time instead of taking messages. Crazy things they do to get rid of pesky persistent parents. The GI called me in the evening, and upon hearing the whole story, said “You know, at this point, I have to wonder whether there is something else going on. She has been on Prevacid for too long to still be so sensitive. We can barely keep her reflux at bay on such a high dose. I am going to speak with Nephro, but I want to look into her with a camera before we think about supplemental feeding.”
The weekend continued the same way. D ate some, threw up some, refluxed the entire time. We could smell acid in her breath. She woke up a couple of times with vomit in her crib. By Sunday, I emailed GI and Nephro letting them know the state of affairs, and asking if I should make appointments to see them both on Tuesday, when we were supposed to repeat labs.
Nephro emailed me back, saying he and GI had already talked, and he thought we should coordinate a multi-specialist appointment, also including the Dietitian. My thoughts were “that would be amazing, but what are the chances we can accomplish that outpatient?” After much back and forth, we got it done. The appointment was made directly through Nephro’s assistant, and GI, who works in the same office but was completely booked, agreed to pop in so we could have a group discussion.
It was magnificent moment of medical coordination, helped by the fact that D was in a stellar mood and feeling great. She gained back some of the weight she lost last week, staying well within her 21lb plateau. We chatted with Nephro and the Dietitian first, poured over all her chemistry numbers, then GI came in. He wants us to schedule an endoscopy in the next week or two. His gut (Ha!) feeling is that what may be behind the reflux is, in fact, Eosinophilic Esophagitis , a condition that was thought to be very rare, but in reality is more and more common. The symptoms pretty much define Daphne:
Of course, there is always the risk that the endoscopy will show a completely unremarkable upper GI tract, and her issues fall within the muddy area of poorly understood long-term effects of prematurity. We shall see.
Toward the end of the appointment, the medical students showed up, rushing after a mandatory review session. At that point, we had seven grown-ups in the small room. Count them: me and Z, Nephro, GI, Dietitian and the two med students. D was incredibly happy and charming, so much so that everyone agreed she was doing well enough we could skip labs and go home.
In the meantime, D’s CPSE evaluations are being scheduled. She will have a psychological and educational eval, as well as PT and OT. They have not requested a speech eval. Last week, as she was in the hospital, CPSE contacted me to let me know the district’s Doctor will be involved in D’s case, since her main issue is being medically fragile.
Juggling all the evaluations and the endoscopy are giving me reflux at the moment.