I have attached a picture of Thomas. I took it yesterday. He is a beautiful baby.
Today, Thomas has a busy day so this will be a short email from me. He has been to Theatre for another Broncogram and he is having an Echo and a Ultrasound too. The doctors are looking for a reason for his respiratory events that have been happening.
Lots has happened since I last wrote but there has been very little change. Most significantly was Thomas had a custom made trachy fitted. It was made a little longer to bypass some cysts in his trachea as I said in my last email. He had another one made that was a little wider as well. Now there is no air leaking around the sides like before. It has helped with keeping him stable but hasn't been the answer yet.
There have been x-rays and ultrasounds and blood tests. He is still on a sedative dose of Morphine, Diazepam and Chloryl, now they have added Midazolam and the occasional dose of Fentonal. He is also on Anti biotics for a rash that appeared around his gastrostomy site.
The stress is not any less yet.
Thomas is a brave fighter and God is the God of the eleventh hour.
We have hope and faith.
Love to all of you from all of us
Julie Dean Rowan and Thomas
Enjoying: The First Week
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