ER Trip...Ellie

This brings us to tonight (sigh…)

I called John Hopkins about her today due to her not tolerating her formula at all since yesterday and her cough getting worse in addition to running fevers, vomiting, diarrhea, volume issues, residual drawback through the feeding tube (even with pedialyte), needing nebs every 4 hours, and simply having no energy (not typical or normal for her). They determined that she needed to be seen in their ER. This meant over an hour drive for us. But that also meant that we were seen by dr’s on her team and they had access to her records.

We arrive and finally find parking (nothing like parking at Children’s in CO) and find our way into the ER. We are taken back into a room immediately as she is a pulm/GI/ENT patient and they did not want her waiting in the lobby. We are greeted by the triage nurse and the dr both in the ER room. This was nice as I did not have to tell her story twice. The ER nurse was also listening in by this point.

I went over the fact that Thursday her cough started, she had her comprehensive/new patient apt on Friday, they did the nasal scope and I thought part of the issue may be due to aspiration from the procedure. We talked about the appointment in a bit more detail and I tried to remember the dr’s names, at this point the ER dr started listing all the dr’s that were there. She laughed and told me “I have the ability to cheat and read the records in advance and see a bit about this child. She had quite the appointment with a whole team of dr’s”

While the dr and I talked the triage nurse took her vitals, listened to her lungs, and did the pre-ER admit things there in the room. Then the ER dr took a look, listened and did her things. Once this was all done the ER nurse finally got her turn to check Ellie out. A bit later we were greeted by the on call pulmonologist for her team. He too had his turn looking at her, listening to her lungs, talking with her. After a rapid run to the potty we were taken off for chest x-rays then back to the room, then back to radiology again for abdominal x-rays, then back to the room. This time she just got to wait. With books, my laptop, and small toys she was happily occupied, quietly played, and never left the bed in the room after the potty and x-ray run.

A while later I got a call from the GI clinic (while in the ER) to see how Ellie was doing and to get a better idea about what all was going on. During this conversation I filled this dr in as well as to what we had been dealing with and let her know this was not a new thing for her but reoccurring but it had been several months since the last time. We talked about how after her latest “diarrhea explosion” she regained temporary motility. At this point she looked up the abdominal x-rays and let me know about the ileus and how that will cause her bowels to bounce back and forth and how she felt it was part of the cause for her motility issues. We briefly talked about the EE and she said EE can for sure cause and exacerbate ileus issues. So now we have a 3^rd GI joining our team to help us with our princess… We follow up with them on the 28^th.

The pulm team decided to place her back it on prednisone to calm the lungs and the cough. She has to keep up on the every 4 hour neb treatments day and night for the next 4 nights then we can look at spacing them out again. We have to call in the morning to get her back in later this week to follow up with them (as well as call our peds dr to follow up with him this week as well). The pulm dr also noticed that her liver seems enlarged…

She is out of school for tomorrow for sure and possibly Wednesday, depending on her energy level. At this point having been taking naps all weekend long and today I am not sure she has the energy to make it through a full school day right now anyway.

As far as getting her back to eating? Right now I have more questions than answers right now. It seems once again we are at a point of every time we go in they are back to finding something new. Just when I think we are getting close to moving from the idiopathic realm to “diagnosis is:” something new and unexpected is thrown at us. I know I surely was NOT expecting anything along the lines of EE… I know we will not know for sure until they do the biopsies and other testing they have discussed. While many of tests results they are discussing will be weeks out, just to know would be nice…

I think...