Night in the ER

Owen's tummy pain has been very persistent. It has been about two weeks now, but at least five days without being able to eat so much as a cracker. I have been talking with GI and Cardio, both local, and at Stanford. Owen has spent many days laying on the couch and each time I try to tube feed him, he tells me it hurts. We got an emergent appointment with GI on Tuesday and had a KUB (abdominal xray). It was determined that he had a little constipation and maybe a stomach virus that wasn't able to clear out due to his immune suppressed state.  The plan was Miralax for three days and we had a nutrition plan to get enough fluid and calories with a 24/7 feeding pump.  I had the healthcare company deliver a feeding pump... something I was sure I would never use again.  The 3am beeping "no out flow" was enough to bring back all the bad memories from years Owen spent hooked up to a feeding pump.  Whatever... as long as he gets through this.

The other issue is his heart rate is more elevated than his norm.  His HR should ideally be in the 120 range, but hasn't been lower than 140 since his episode in April.  I love to see 140 now, but the last few days I have seen 150 -170.  I am not convinced a stomach virus would cause the increase in heart rate, not unless he is experiencing more pain that he is letting on. 

I called our local transplant cardio team on Tuesday to try to get in for an echo, just to be safe.  They suggested we come to the ED (emergency department) and get a full workup.  I would have preferred to come into clinic and have an echo, but that wasn't an option.  Instead, I decided to run to GI for our already scheduled appointment and get the xray there. 

This all leads us to today.  Owen has remained the same, or worse, each day.  He feels best when his tummy is totally empty, but he has zero reserves for weight loss at 39lbs, so  I have no choice but to feed him.  Such a struggle!  Owen's HR continues to increase to 170 at times, so Rosenthal and his NP from Stanford called at 7:45pm tonight (Wed) and said they feel like we should bring him in to the ED.  Just to be safe.  A tummy ache was his only symptom in April and he ended up very sick, very quickly.  So here we are....

We got a VIP pass through the ER, straight to a private room.  Echo, EKG, KUB, Chest Xray, and two failed attempts at blood draws ... Owen is now passed out.  After six hours in the ER, we have zero answers. :)  I'll just smile because I'm so tired I'm becoming delusional.  Echo looks great!!  Chest and Tummy xrays look great!  EKG looks great!  The nurses kept missing his veins so no labs were done.  We got a urine sample that came back clean.  So... there's that. 

I suppose since we have no idea why Owen's tummy continues to hurt.  He won't eat.  He isn't tolerating his full calories.  I suppose we will continue to clean out his tummy with Miralax, induce some diarrhea and keep him hydrated at the same time.  The ER doc just said there was a slight plural effusion on echo and to double his Lasix.  I said thanks... but no thanks.  Sigh.

Ready to go home and catch at least an hour or two of sleep before my other kiddos need me.  I'm glad we got Owen all checked out, but a little concerned that we really got no answers regarding his tummy issues.  Tomorrow is a new day!