Thursday Update

Ellie is still resting and recovering from surgery. She is still on vent settings while she recovers. Yesterday they started giving her very small amounts of milk and plan on increasing them if she tolerates them well.

We started our trach training yesterday. It was very interesting. We knew a lot of the basic information because we have seen the nurses do her care countless times already. Tomorrow we start more hands on training. The training will be at least five sessions long, lasting about 2 hours each.

We are starting to think about and prepare for Ellie coming home, though they tell us it could still be about 6 weeks. We have decided to set up a crib in the family room so that she will always be near during the day. It will also make it easier for the night nurse to have her own space while she is caring for Ellie and we are sleeping. We will need to come up with a way to store all the medical equipment and supplies. There will be monitors and suction machines as well as enough trach supplies to last a month.

There is a lot of paperwork involved to get Ellie home to us. There are a few programs that we will be enrolled in to help with the extra costs of a special needs child. In Kent County, there is a program called "Children's Special Health Care Services." It helps to pay for Ellie's equipment needs and also coordinate special ed programs like Early On and physical therapy. Ellie also qualifies for a type of Medicaid called "30 day medicaid." It kicks in when a child has been in the hospital for 30 days or more. It is supplementary insurance that covers any medical bills from the hospital stay that our private insurance wouldn't cover. We've been working with a hospital social worker to help fill out all the paperwork. The problem with all the paperwork and different agencies is that it takes time. We just can't wait to have our girl come home.