Yes, the fireworks were going off yesterday not just to celebrate America’s birthday, but to celebrate that we left the hospital.

When the doctors decided to let us go in the morning, Ella had not pooped. I think it was simply determined that she was no longer having diarrhea. And knowing Ella, it might take a while to get a stool. I convinced the doctors to let us go home and manage it from there. We would be in contact with her GI doctor and just as we had from May 9th – June 26th, manage this issue from home: she was not in a critical state. And of course, if anything made us concerned, we would be headed right back. I must have been convincing. Ironically, while we were packing up getting ready to leave the hospital, Ella finally did poop. It was still loose but did not seem to have as much mucous and no blood that time.

The discharge orders were written for Ella to have continuous feeds at a rate of 55 per hour on diluted 30/kcal of EleCare (960ml of EleCare and 360 of water in a 24 hour period). It is tough to have her hooked up to a food pump 24/7. Frankly, it is just not realistic for us. So as we’ve come home, we’ve tried a few different feeding tactics. One thing is for sure: when we try to feed too much volume too fast (like how she was fed before), she lets us know. It seems like she is uncomfortable. Plus, we have had more retching and mucoids throughout the day since we have switched back to EleCare. I’m not sure why she is experiencing more reflux, but it is happening. Also, I’ve seen her heart rate go as high as 176 within a few minutes of a feed session.

She did poop about 4 times today which is more than normal and still loose. The tough part: just as it has been in the past several weeks, the stool is varied. One thing that might have contributed: her new GI medicine, sulfasalazine, was administered around 2pm at the hospital on Sunday. Our pharmacy was closed Sunday and Monday and we did not find another compounding pharmacy to fill it until 5pm on Monday, so she missed a couple of doses. Maybe that contributed to the looseness of the stool.

Only time will tell if we continue to have the same issues. Since nothing is truly definitive, we just have to wait and see. It is better than it was when we went to the hospital, and at least there is nothing that is alarming. But at the same time, we do not have a ton of answers as to why her guts are responding this way. Our follow-up with GI is on July 23rd.

In the meantime, we’re just thankful for Josh’s new job and the warm summer weather. Please pray that Ella will gain weight and continue to make forward progress with her feeds.

Psalm 119:116 (NIV)
Sustain me according to your promise, and I will live;
do not let my hopes be dashed.