Because we miss the place....... Update at the end of post

Tuesday morning around 2am Zachary's feed pump started beeping and displaying an error message. Becky tried troubleshooting it but the pump would not push his food thru his NJ tube. Becky  turned off the pump until morning. 

In the morning, Becky and Sue determined the NJ tube was clogged so after conferring with his docs, Becky put Zach on pedialite thru his G-tube. This is because his NJ tube stops in his small intestine and the G-tube empties into his stomach. Since he has had nothing in his stomach for the last 7 weeks, it is better to start slow. Tuesday night Becky started Zachary on elecare. He was doing fine until Wednesday. He looked really puffy and was lethargic. He was also breathing hard. 

Becky gave him an extra dose of his heart meds and tried calling his cardiologist but there was no answer. In the afternoon he looked better so we did not escalate the issue. 

This morning he looked puffy again. He started chocking and was really struggling to recover so Becky called the paramedics to have Zachary transported to PCH. Becky told me that this was the first time she was scared for Zachary since he has been home. 

Docs are checking to see what is causing these symptoms. 

So we are back... Waiting to see results of what's going on.  We will update when we know more.  Thanks for the prayers. 

Update:

They did an X-ray and it looked a little fuzzy which mean possible fluid.  They also did an ultrasound to see if they could find the fluid.  There is a little fluid building in the plural space like has happened in the past.  It is nothing they will do anything about today.  We were sent home and now we pray and watch.  We pray this fluid that is starting to build isn't what it was before and goes away. In the next day or two we will know if we have to go back or not because he will stay puffy and will start to work even harder to breathe.  He is showing the same signs he did in the past when he had the chyle fluid.  Doctors are not sure what to do at this point.  We have upped Zachary's diaretic meds to help the fluid come off.  This did not work in the past but they want to try just to make sure.  If it does not go away this will mean another surgery to fix this problem.  Only God can heal this and make it go away.  Now we wait and pray.   Thank you all for your support. This road is not easy. We know that God has a plan and we rest in Him.