Tonight, as was the case all day, I'm wondering why each "new" attending intensivist thinks that they need to reach some lofty goal by the end of the week. Why can't they just accept that Mason is doing better than they thought? Why can't they realize that it's in part because they've backed off and we've been directing a lot of his care? Why can't they realize that Mason is his own boy and he moves to the beat of his own drum?
Now, please don't misunderstand. I know am not an intensivist (I don't even play one on TV!). I haven't been to medical school. I don't pretend to think that I know more than they do about medicine, ventilators, lung disease, or anything else we have dealt with. I know I am only as good as the information I've been taught by Mason and these or other providers over the last 2 years. What I do know is that Mason has never followed the "rules" of medicine. What I do know is that he has always needed time to adapt to changes and never done well when too many things change at once.
So, now you might be asking why. Why is this coming up again? Well, the intensivist this week has a goal of weaning the PEEP down to 8 or 10 by the end of the week. She realizes that we need to go slow, so maybe going down by 1 each day. Just yesterday we talked to the group about the vent settings and I thought all agreed that we needed to get his oxygen concentration down first. This was the most damaging to Mason's lungs, so this was the most important to wean. Despite that agreement, we've still weaned the inspiratory pressure over the last 3 days. Well, as I wrote last night and as still happened this morning, Mason needed time to adapt to all the changes. Last night and this morning, when he was awake, he saturated in the 50's and 60's. Thankfully, the intensivist this week agreed to make no changes today so that Mason had some time to adapt (though she's still holding on to her goal). So, this afternoon, Mason's saturations were better when he was awake and tonight, they are much better. Right now, he's lying in his crib, playing on his back, saturating in the high 80's and low 90's while on only 76% oxygen concentration. If we had continued to make changes, we would have challenged him too much and he would have fallen further behind. I am so thankful we were able to stand our ground firm enough that no changes were made today. I am so thankful we were able to stand our ground firm enough that Mason is doing better tonight than he was last night at this time.
For those of you following along since the very beginning, you know that Mason has taught us many lessons in life. Tonight, I am reminded of the one he tries to teach again and again and again -- PATIENCE! Mason teaches us again and again that we must have patience for the things that are important in life. I believe right now he is trying to teach the doctors as well. I know at least two of them have learned from him and I hope that the others will as well. Mason needs them to be patient in their care. Do not try to rush him. He will adapt to the changes, just give him time to do so.
Rate: 28
Inspiratory Pressure: 22
Inspiratory Time: 0.65
PEEP: 12
FiO2: 76%
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10 comments:
Jason and I are with you. Don't push him... let him march to his own drum. We love you guys. Keep standing your ground!!! But we know it is a tough balance.
Prayers are continuing for wisdom for all.
You tell them what they need to know, Christi.
Glenn
What the dr's learned through books - you two have learned through life, and sometimes life is a much better teacher. Mason couldn't ask for better advocates than you two.
-Beth
Mason, Christi and Bill--You are wonders in a world of miracles and you are making them happen! We are with you all the way--Love, Anita and Daryl
Just keep fighting for Mason. You both know him better than any of the doctors. Thank you so much for keeping us posted. Prayers are still being sent.
Mason continues to benefit from yours and Bill's incredible strength, as you guys do from his. Stay strong! Maura
Yea for Mason: holding court and teaching life lessons! Thinking of you and sending strength and love.
Corrine
You are amazing advocates for your little guy. Keep up your great work and Mason will keep up his.
Catherine
Thank you so much for all your updates on Mason - it is one of the first things I look for each day. I find much to be hopeful for from your recent postings!
I wonder how your days go - basically living at the hospital now. So many arrangements to make - dog care, mail, and so many basic things when it is hard to find time to go home - wanting to spend every minute possible with Mason, and needing to be present at hospital to keep up with medical descisions as well. And in a hospital uninterrupted sleep must be hard to find!
It is great that you are standing your ground for the important medical management things - an exhausting thing to do with so many doctor changes at Doernbecher and many not used to parents who are as knowledgeable as you are. Nurses who might know you and Mason better than the doctors hopefully help advocate, too (I have known some wonderful and powerful pediatric nurses).
Like everyone else I am full of awe at the way you and Mason all show so much strength and endurance. I send my continuing prayers. Chris
Just wanted to say that I am thinking about you guys lots and I love you!!!!
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