On again, Off again...

Zoe in a great mood despite the tube.

Zoe back on tube feedings

It's been a busy week here. After three wonderful weeks of Zoe being well, she came down with another chest infection. She was choking a lot on her mucus and had a fever for six days straight. So after having to do the first step of CPR on her several times in one night, we decided it was time to take her back to the doctor's. The pediatrician prescribed an antibiotic to dry up the mucus. It began working right away but unfortunately zapped Zoe's appetite (which has happened before). We now have an emergency protocol to insert the NG tube at home after 12 hours of Zoe not peeing. And so, Sunday morning, while Gavin was in the middle of his third 12 hour shift in three days at the emergency room, I inserted an NG tube.

Zoe did great with the tube insertion. We have come up with a way of bundling her body and Riann (the respite worker) held her head. It was a rough week with Gavin working lots of hours (we are grateful for the hours/money but this week has been hard since it has been 18 days since the two of us has had a day off at the same time).

Thankfully, Gavin's dad Alan is here right now to help out. Zoe, as always has done amazing and maintained a great energy level throughout this latest illness. She even went to daycare for half of Thursday and all day today. In the past, we kept her out of school when she was on tube feedings. But given how great she was feeling, we didn't think it was fair to keep her home. Tonight we let Zoe take the tube out and hopefully she will eat and drink well this weekend.

Feeding Study Scheduled Tuesday

Zoe has a feeding study scheduled for this Tuesday. Due to her multiple lung infections and extra mucus in her lungs, the doctors want to make sure she is not aspirating on her food.

Zoe helping her grandad pull weeds outside.