Adjustments to Expectations
As of the date of Iain's surgery I think my expectations have been on hold regarding his outcome. Never fear I have not lost hope at all and am amazed that Iain has that fortitude to fight for his life day in day out. However, for everyone else who has been so kind to follow us and and for those who have not gone through this process it might be difficult not seeing a continuous improvement. So I wanted to warn you that we may have reached a plateau for a while in the improvement of his lungs. It seems that proning is not really having a big difference now in his lug compliance. Also, he clearly hates being prone so he has to be sedated heavily when he is in that position. This is, in of itself, problematic for various reasons. When he is prone he needs much higher doses of blood pressure meds and all of these hurt the liver and kidneys. So, they may discontinue proning, it has got him as far as it can. Our next potential decision as parents may be whether to allow a tracheostomy so that they can wean the sedation as it will not be as uncomfortable as the vent. However, for teenagers it is obviously a massive issue to be have a trache. So I will be polling his friends to find out what they would want in his position. The potential ability to be weaned off sedation and to be more mobile versus the embarrassment of the tracheostomy. I know what John and I would want for Iain.