Thursday Update

It was a busy day today at the hospital.

Testing: Praise God that the test for Spinal Muscular Atrophy came back negative today. This was one of the dreaded tests that we were praying was negative. There is one more outstanding test for Myotonic Dystrophy that we are praying comes back negative.

Trach: Ellie had her first trach change (of many to come) today. The doctor wrote in her chart that her trach site looks "excellent." The best part was that now Adam and I can hold her for extended periods of time again. Yay! She is doing well breathing with CPAP. They will not attempt to have her breathe on her own until she has recovered from her G-tube surgery next week. The doctor said today that her lungs sound very good and seemed optomistic that she will be able to breathe on her own. Keep praying that she will not need CPAP when she comes home.

Other random info: The nutritionist came by and said that Ellie is growing very normally, following the normal growth chart curve. She said she will come to talk to me about how much I'm supposed to feed her when we go home. This is all new to me, as I'm used to "one side, or two?" measurements.

Our doctor called our insurance today, and it sounds like I will be approved for long term rental of the hospital-grade breastpump. This will save us a lot of money, and from what I hear our insurance does not usually approve this. So that is good news too.

The physical therapist has shown us a few range of motion exercises to do with Ellie to keep her from getting stiff. Starting tomorrow he is going to do more evaluation and more intensive therapy.

Discharge info: I talked to the discharge nurse yesterday. The are still acting like it will be 4-6 weeks before she will be able to come home. They have started looking into home nursing care for us. We will start our trach care training next week. Pray that things move forward quickly.

We are hoping and praying for a very special Thanksgiving with Ellie at home!