There's been a lot going on, so I thought I'd update. He has been in the PICU for 3 weeks today, and I expect he will be in for another 1 1/2 weeks plus 2 weeks inpatient rehab after that before he can go home.
His dystonia had gotten very bad, to the point it was affecting his airway, and we had taken him to the local ER. They transported us by ambulance to Children's. At Children's they put him on a Versed (strong sedative) drip to try and control the dystonia. He was diagnosed with Status Dystonicus (a rare condition affecting people with dystonia) and put in the PICU. About a week in, he was up to 0.6/kg/hour on the Versed, which I later found out is the equivalent of a 10 mg tablet per hour of Ativan! Something drastic needed to be done. His neurologist and neurosurgeon finally agreed to trial a Baclofen pump. Baclofen is a medication that works in the spinal fluid and quiets nerve impulses to the muscles. They surgically inserted a catheter into his spine and ran it to a port in his side. He gets a continuous pump of the medication. They are weaning him off the Versed as they increase the Baclofen. The process takes a long time because of the high doses he was on. So far, it's working great.
He did still have trouble with swallowing, even with the Baclofen at a good level, so the ENT doctors injected Botox into a muscle at the top of his throat yesterday to help relax it so that it's not pooling saliva in the back of his throat. It will take effect in about a week, then speech therapists can try to re-teach him how to swallow. His bodily muscles are all weak from being in spasm for so long, so he will also need intensive PT and OT to help him re-learn everything from sitting up and holding up his head to standing and walking and using his arms and hands.
Has any of you ever had to deal with long-term stays in the ICU? We're finding it increasingly challenging to be able to stay with him, especially when we have 4 kiddos at home, and at least one of us needs to work to keep food on the table. Any suggestions or helpful hints?