We are home! We got home about 7pm last night and a nurse came over at 8pm to make sure we were all set up. Dave slept in Carmen’s room to make sure her feedings went OK. Hopefully we will get private duty nursing at night within a few weeks. This is a HUGE prayer request. The hospital’s case manager talked to Carmen’s insurance case manager and nursing care may be a possibility. I think this might save my sanity to be able to sleep at night.

As of now, Carmen is on 22 hour per day continuous feeds. This means she is attached to her feeding pump for 22 hours per day. The pump is portable but going out and about will get more complicated with each new intervention and piece of equipment. The doctors were hoping (as were we) that Carmen could handle 12 hour night feeds with 3 short bolus (fast) day feeds. But, she chokes and gags on faster feeds so we are going with the all day/night feeds. She is starting on Prevacid for reflux so maybe that will help. One thing we learned our first night home is that Carmen has to have her diaper changed at night, even if she is asleep. Feeding her all night long and not changing her results in quite a mess!

Lauren is highly interested in Carmen’s NG tube and equipment. She is very happy to have Carmen home!

Our medical distributor gave us vanilla Nutrin Jr. so Carmen smells quite sweet!

We hope that within a month Carmen will be back at the hospital to get a G-tube (tummy feeding tube). This will be the same set-up (feeding pump) but will be easier since the tube will be in her tummy and not out her nose.