Wednesday, August 29, 2012

An Update: ER And Some Bad News

On the 22nd (last Wednesday) I started noticing some familiar symptoms: intestinal contents flowing up back into my stomach and increased vomiting. Ew. So I slowed feeds from 60 to 40cc/hour.

The very next day I vomited curdled formula and bile, so I slowed feeds to 20cc/hour. But at this time I also started to vomit all medication, as everything was flowing up from the jejunum back into my stomach. So I stopped all my meds.

My usual overnight venting showed all the formula from Thursday's night feed, along with tons of air and bile in the bag. I stopped all feeds on Friday the 24th. We also requested a KUB to make sure my G/J tube had not coiled back up into my stomach.

I continued to decompensate over the weekend and by Sunday could not get out of bed. I went grudgingly to the ER, where I was given IV Zofran to stop the vomiting, IV Dilauded to help with the excruciating pain, and IV D5 normal saline to replenish fluids and blood sugar (spilling ketones). They also did a full panel abdominal X-ray.

Long story short, the tube is in the right place, which brings us back to the place I was in last fall/winter: reverse motility. Last winter they were going to place a Broviac central line and initiate TPN due to an albumin of 2.0 and significant, intractable dehydration and low blood glucose. To which I responded by abruptly leaving the hospital and worked with a feed rate of 5cc/hour and worked my way up to 45cc/hour over the next month as the symptoms of reverse motility subsided.

Reverse motility is chronic, meaning that there is rarely one isolated incident of it and it never comes back. The episodes are coming at closer and closer intervals. At first it was every three months. This time it around was less than two months. Which, you can imagine, makes for a pretty miserable experience.

The dehydration and pain is the worst of it. I can tolerate 3oz of ORS every 90 minutes by mouth for about 8 hours. I was tolerating 4oz in a 20 minute period before my motility cycled back this way again. This leaves me still pretty dehydrated.

We've been in touch with my PCP all week discussing what to do next. I see him tomorrow and here are the options we will be discussing:

Separate G and J tubes if the pylorus is closed (it is always open with the G/J tube), then intestinal contents won't be as free flowing during bouts of reverse motility. It could also mean fewer fluid losses overnight ie bile during the overnight vent even when my motility is back to baseline.

PICC Line for hydration purposes. The idea would be to infuse 2L D5 normal saline overnight while still taking as much fluid as I can by mouth, until the episode passes and I can take 100% by mouth and per tube. The PICC would remain in place. The saline orders would be intermittent. If, in fact, this becomes longer in duration over time, the saline orders will become standing and I will do them every night even when my motility is back to baseline.

Barnes-Jewish Hospital's Motility Clinic to see what other options there are. There is a four month waiting list and it means riding two hours in a Medicaid can alone :(, while being there and told there is nothing to be done besides the last option which would mean:

Broviac or Port Access and TPN dependency which I am not emotionally prepared for. I have been tales to others who live with this and they say it is not that bad. But I have been tube fed on and off (mostly on) since 2007. I am used to tube feeds. I have only received TPN inpatient via a PICC that was always pulled before I went home.

We are debating on further testing which may also have to be done at Barnes-Jewish. But we'll cross that bridge when we get there.

I don't really know how to feel about all this. I've spent the last year battling increasing symptoms that used to exist as minor annoyances. Now they can no longer be overlooked :/

We take the first steps tomorrow and I will update when we know more of the plan.

1 comment: