Seth has been doing well during the night and day with the adjustment of meds for pain and muscle relaxers. They sat him up in a chair for a couple of hours yesterday. A special cardiac chair is used to help with circulation. Today they put him bedside but they set him back down because his BP was rising. We know he is still neurostorming by the symptoms that he experiences: high heart rate and blood pressure, sweating, rigid muscles, abnormal posturing and fever. It can last for minutes or hours.
We don’t know what triggers it but can include changes in meds, being uncomfortable or repositioned in the bed, or from environmental stimuli (loud noises or alarms)-which is why we’ve had so many no or low-stimulation days.
~Please continue to pray for healing of body and mind. Please pray for those that take care of Seth and keep him safe and stable.~
On Apr 28th, Seth was taken off his ECMO* machine. We are thankful for the technology and care he received for the 19 days he was on it. In my opinion, this was one of the most frightening periods of Seth’s time here. It was the last medical option that could be done for him.
Our friend, Sammy, shared the story of his Pastor and wife’s heartbreaking story of their newborn daughter being placed on ECMO because of a viral infection and complications.
They said goodbye to their 10-day old, sweet daughter, Child of God, Gemma, but in the depths of their grief, Gemma’s mom started a non-profit to provide comfort and practical care items to families whose children are on ECMO at Phoenix Children’s Hospital. I’m sharing this with you because so many of you provided us with such items while Seth was in the Trauma & Medical ICU’s and we feel blessed beyond words how much this helped us.
Please learn more about Gemma’s Relief Project and how they help other families during such critical and uncertain times with their children. https://gemmasreliefproject.org/
-Darcy
*ECMO, short for Extracorporeal Membrane Oxygenation, is a life support system that provides temporary support for the heart and/or lungs in critically ill patients. It uses a machine outside the body to take over the work of the heart and/or lungs, allowing them to rest and potentially recover.
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