April 3, 2021

Well, it seems our recent run of good absorption and avoidance of the hospital (except for the recent j-tube closure, which is thankfully doing fabulous) is over. We were so optimistic that after a year and a half of easy ups and downs while she’s been on the Gattex medication, Evelyn’s bouts of pseudo obstruction were mostly going to require hydration boluses here and there. Up to this point they have been much more manageable and minor compared to years past. She has not needed hydration management in the hospital since she started the Gattex (Sept 2019), except for in August 2020 when we were transitioning her back onto TPN again and required hospitalization for that.

But, this last weekend was the end of that run. We’re still not sure yet what has triggered her guts to turn so upside down, but Saturday and Sunday were painful and dehydrating days of replacement fluids at home. By Monday evening, Evelyn’s guts seemed to have simmered down somewhat, but nonetheless we thought she should be monitored overnight in the hospital to be sure we had gotten things back on track. She appeared to have turned a corner by Tuesday evening. Her stool output decreased significantly throughout the day as we hung out in her hospital room, the color returned to her cheeks and she seemed on the mend. So, after a short stint in the hospital, we pushed for home, arriving in time to see another uptick in outputs almost immediately.

Overnight Tuesday night, things became much worse for Evelyn than before, almost doubling the amount of fluid her body was dumping in a very short amount of time. We brought her back into the hospital on Wednesday to monitor her outputs and labs and get her back on track yet again. Despite the large amounts of fluid she was losing per day her belly pain was mostly gone, her energy levels were pretty fair and she was in a good mood, so we can thank God for this.

Yesterday, her blood pressure dropped and labs indicated a possible infection. Thankfully, the doctors have been very proactive and have started antibiotics and antifungals to fight off anything that maybe growing while we wait on blood cultures.

We’re bummed to think that perhaps Ev’s intestines still do have a mind of their own and we are certainly reminded yet again that so much is not in our control; God is the one guiding and He has allowed this little trial to help us remain small. Please say a little prayer for us that God will give strength for each moment.

Leave a Reply

Your email address will not be published. Required fields are marked *