seems I deleted the previous version of this post instead of the draft version of it so will try again!
Its not been such a good day. Lyalls secretions have become discoloured, his temperature as gone up and he has been needing oxygen. One of the possible risks after this operation is infection. When a patient is heavily sedated and ventilated they are more at risk of infection. As a precaution he has been on antibiotics since the surgery but these have been changed to something stronger today and these are being given intraveneously. Samples of secretions have been taken and tested for viruses and bacterial infections. The virus one has come back negative but the bacterial ones take a bit longer. Its obviously worrying but the doctors are being very proactive and treating aggressively and the nurses are doing regular suction to ensure his chest remains clear. He is also having regular chest physio. What has been good is that they have really listened to us when we said his base temp is always low (36.1) so for him 37.3 is raised. We have also stressed how he often has secretions even if you can't feel or hear them and this has been taken on board so suction is being done really regularly and proving effective.
He is started to twitch a bit in his legs which means he is overcoming the paralysis drugs a bit-nice to see his rebellious spirit shining through!
Depending on how he is in relation to the suspected infection they may start to wean his sedation a bit tomorrow and take him off paralysis in readiness for taking him back to theatre on Monday. This won't happen until the consultant is in as there will be a risk of him pulling out his ventilation tube as he won't like the sensation. Whilst his surgeon said if this was to happen earlier than planned he wouldn't want him
re-ventilated but would rather see how he copes it would be better all way if this was done in a more controlled way on Monday. If they feel the infection has taken hold they are likely to leave him as he is and delay the weaning until he has picked up a bit. We are aware of this happening for other children who have gone through reconstructive surgery.
So plenty of nerves here over potential infections plus the build up to Monday. After we'd had tea tonight we both felt we needed to go back and see him. Its very hard leaving him alone in the hospital and so pleased we can pop back when we want to.We are flagging a bit but the support we are getting is really helping.
Once again we have received such good care and the nurse we have had for the past 3 days has been wonderful.
So please keep everything crossed that he fights this infection quickly and things can go ahead as planned.
Big thank you to our friends in the Tracheostomy UK Support Group who are providing fantastic moral support. xxxx
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