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.

Comments

  • Sarah

    However long this takes The Mitelhaus family will always be by your side. This is going to be a long journey but you have so many friends, family and even strangers who will continue along this journey with you.

  • Jennifer Piper

    Seema and John, While no one can tell you what to do, I know (and so do many others) that you will make the right choice for your boy! Best wishes to all of you from all of us at Summit!

  • Chrissie M

    There is no perfect answer. Hard choices my friends. We're here with you on this journey no matter how long it takes.

  • Elizabeth Burrows

    every day, kids at Summit ask, "how is Iain?" so many kids sending hope and love for your sweet boy. when you are tired, think of all of us standing behind you, smiling, holding hearts in our hands.

  • Mistysmommy

    We are behind you every step of the way! The journey is still in front of you. I pray that the journey is progressive. You both are WONDERFUL parent's! Your family is amazing! Your strength is God's gift. Be well with a comfort that we are with you all!! Bev

  • susan muir

    What a rollercoaster this journey of Iain's has been! It must be so difficult making decisions. We're thinking about Iain and the rest of the family too.

  • Lisa Hering

    Hess and Prakash families; we are with you daily.

  • TheSquad

    Hey Iain The Squad wishes we could've come out this weekend but we will come see you ASAP. Boulder high lost the Fairview basketball game last night, kinda a bummer right? Maybe you can plan next year! Hang in there man

  • Aunt and Uncle

    Iain, I can see how that set up is UNCOMFORTABLE and maybe your body is giving clues to the staff to try new things. Maybe you can be less like a teenager about it though,may be a little bit more compliant with what the nurses and the Doctors and your Mum and Dad are saying. I just make this request because so many of us want to have a conversation with with you. Because honestly, if you were around you would have pointed out early that I had picked out a youth baseball cap for uncle Kurt instead of an adult one.

  • lisapendergast

    We are here with you every step of the way no matter how long your recovery takes. I'm sorry the boys' visit couldn't happen this weekend, but whenever you are ready, they will be there. Stay strong Iain....Love, Lisa and Karl

  • SherriCowhig

    Thank you for the updates and knowledge of the expectations in the upcoming days and weeks. Without knowing the fullness of the situation it is really challenging to give advice but from a distance it seems that having discomfort and less mobility for a short time would be preferable over having a trach permanently. I know you will make the best choice for Iain though because you love him so tremendously. The road may seem too long and too steep but strength will come unexpectedly at just the right moments.

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