Ups and Downs With Kev's Progress

Two lots of surgery, responding nods, wriggling around and a clonic tonic seizure to top it off!!

Thursday saw Kev off to theatre and had a cranioplasty (third of skull replaced). Early hours after surgery went well, however Kevin's CAT scan showed hydocephaly (fluid build up around brain).

After deterioration early hours of Saturday morning it was decided to take Kev back to theatre to re-remove the skull. We were understandably very upset, this happens to o­nly 5-10% of clients. So the waiting and watching started again, this really takes the toll o­n us.

It has been great to have Jay, Masami, Aska, Zoe, Dad and Margaret with us to support and provide some distraction for us.

Sunday was a day of Kev being heavily sedated until around 4pm. He then became alert and was moving both legs and was attempting to pull himself up off the bed!! This was great movement and thought all was very impressive until we saw what the next day was to bring.

Monday was started as an amazing day with Kev indicating the need to go to the loo, the "obeying commands" to grab hold of the bedside and roll to the right with very little assistance. That afternoon Kev was moved from the trauma room to a "normal" room. This means we can visit at 8am instead of 10am.

Kevin surprised me by looking me in the eye and responding appropriately with a nod to two questions!! He also continued to roll and move heaps around the bed. He is able to scratch his head and face with precision and shows good fine motor skills. I went home happy after giving Kev a wash, massage, toothbrush and settled him into the room. After the upset and set back I felt a little happier.

A phone call was received at 11:30 to inform me that Kevin had had a seizure which required a medical emergency call. He settled after a while and eventually regained his GCS of 10-11. Unfortunately he reacted with a rash to the anti-seizure medication; this has now been stopped and he has been sedated until the neurologist decides what to do.

We wait to see if the hydrocephalus will subside naturally or if he will need to have a permanent shunt put in place to drain the fluid.

Finishing o­n a good not,e the speech therapist is willing to commence some oral food soon and the trachy has been de-cuffed for a week and a half!

Love to all.