Today has been tough. Lyall is much better but had really been fighting against his sedation drugs overnight. The doctors on Intensive Care were hoping that it would be possible to find a slot in theatre today to wake him up but when the surgeon came round he said this would not be possible as the acute list was just too long. He was still very keen to look at the graft prior to waking him up so we geared ourselves up for a day of preventing Lyall pulling his vent tube out.
Lyall almost immediately became very agitated and kept going for his tube and writhing round on the bed. He was coming in and out of sedation and at one point managed to turn himself over on to his front. This is his preferred sleeping position and after a dose of sedation he did settle for a while.
He then however needed physio as his secretions were causing his SATs to dip and heart rate to rise. It took 6 people to hold him down whilst this happened and it became very upsetting but we had no choice. He was too sedated to be left to breathe for himself if he pulled his tube out so if this happened it would have meant an emergency intubation probably requiring strong drugs to do it and setting back the planned extubation by a few days.
It was decided that he would have to be paralysed again as there was no way we could keep him calm all day and all night. This proved difficult as he again became very agitated and no one could let go of a limb to go and get someone to come and set up the drug. Eventually a doctor came in and said "is he on atricurium?(paralysis drug)" to which we answered "does he look like he's on atricurium??" It was a fairly tense period with people ducking under each other to set up infusions, untangle lines and someone jokingly described it as a PICU version of the game of Twister! At this point the Care Quality Commission who are inspecting the hospital arrived on the ward!
Eventually Lyall was still and an extra dose of sedation given to settle him and everyone relaxed a little bit. At one point the CQC were outside Lyalls room and a senior sister popped her head round the door to check all was OK. We asked if we could talk to the CQC and they agreed so we spent 15 mins giving a very swift run down of the last 5 years and praising the quality of care we have received at the LGI.
The rest of the day was calmer and we managed to give him a wash and put on lots of moisturiser as his skin is getting really dry in the warm hospital environment.
Generally though it has been really distressing watching Lyall and there have been many tears. He had so much spirit that it felt cruel to paralyse him but we were told that the sedation would mean he was comfortable and wouldn't remember it. Its blooming hard though as even tomorrow when he wakes up he will be struggling to come off the sedation and likely to be very agitated. He is likely to need weaning doses for a few days so it will be a while before he is back to his true self.
So the plan for tomorrow is to take him off the paralysis drug at 4am then off sedation at 6am. We are going in very early to keep him calm and his hands away from the tube. He will struggle coming off the sedation and be very agitated but has to be more awake before he goes to theatre. The surgeon hopes to get him in mid morning.
Whilst Lyall has been trachy free for a week he has been ventilated so hasn't breathed for himself yet. We are nervous, apprenhensive, scared and also excited about tomorrow.
By the time we write the next blog our lives could potentially be very different..................!
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