I have a seven year old daughter who suffered from cardiac arrest in January 2011, since then she has been in a comatose state - conscious not oriented as the doctors suggested. She is on mechanical ventilation and had a trachestomy procedure, weaning her from the ventilator failed a number of times. She also had a gastrostomy procedure.
Prior the incident she had ataxia, ptosis and some fibre atrophy. We are still not sure as to why her heart stopped but the lack of oxygen to her brain is evident. She has sleep/wake cycles, she yawns, cries and is responsive to pain and light. Her pupils are sometimes dilated, other times not so much.
Since being admitted to hospital she suffers from spasms which till last week were in block form, her muscles were almost permenantly contracted. Last week her spasms changed form, they have become more like on and off. All her body jerks, sometimes up to 30 or more times a minute. The doctors in the NICU are trying to keep it under control but what we understood from them is that it is increasing. It is uncomfortable for her and heart breaking for us to watch her suffer like this.
Can someone please give me advise on, why her spasms have changed form? is this change positive or negative? what tests can be done to identify the cause? is there anything we her parents can do for her?
We are trying to take things one step at a time but this new development has us confused and worried.