6 Months Post Extubation

Today it is 6 months since our superhero came off the ventilator and I could finally update everybody as to what actually happened Easter weekend..

I still remember it so clearly.. we had gradually seen the improvements during the course of the week after his Easter miracle and we hoped with all our hearts that we were heading in the correct direction. We knew the time for extubation was getting closer, his numbers were all in the right place finally and his oxygen and ventilation rates were stable and low enough to proceed if we could do it in time before he deteriorated again as there was a minor infection brewing..

It was our 7th wedding anniversary and we had arrived at his bedside hopeful that morning after a fairly peaceful night sleep (finally) knowing things were looking good. His overnight PICU nurse (who was one of my favourites to be truthful) had made us a card with his handprint and some paper flowers BUT even better had managed to get his ventilation rates down the final step overnight ready for ward rounds and decision time..

The doctors came round on ward rounds and without even saying a word one of them turned his ventilator from BiPap to CPAP then looked at us and said "let's push for extubation today, this is our window let's not miss it". Both myself and Mike looked at each other with tears in our eyes..

The day wore on slowly and things were checked such as chest drains etc and sedation was stopped of course. It was such a waiting game and we couldn't bare to leave his side.. Finally at 5.30pm the tube was out and he was extubated!!

Our amazing boy has taken leaps and bounds since that day and he makes me so happy and thankful. I didn't believe in miracles before all this but apparently I gave birth to one!

I do sometimes get upset thinking back to Easter weekend though (obviously) and how we were literally seconds away from loosing him. But despite ALL of that the thing that upsets me most and tears me up inside is knowing that underneath the muscle relaxant over Easter he was awake and probably very frightened..

Imagine lying there unable to move, open your eyes or even breath and then feeling what is going on and hearing all the sounds and people around you. Whilst he shouldn't have felt "pain" much like in a csection there is no doubt he would have had some awareness and he must have been so so frightened.. hence the high heart rate and that he almost went into cardiac arrest. I feel awful about it all, despite repeatedly telling the doctors I suspected this to be the case, but they assured me it wasn't!

I just hope our voices, songs, familiar dvds and stories brought him some comfort and helped him feel safe and loved. That's the problem with muscle relaxant though, it literally paralyses you to enable the ventilator to do it's job without your body fighting it and until it is turned off (which is risky itself) there is just no way to know. Ironically we only turned it off as part of the process of turning life support off but I am so glad we took that step and found out he was awake so they could sedate him properly and let him relax and heal..

That was obviously all he really needed alongside some better stomach medication that Daddy had also been saying for days!! Sometimes parents really do know best and not all patients are 'text book' cases! ;)