Dylan lungs were still leaking air only not in to the chest cavity where it could be drained.. there was so much it was filling up his entire body like a balloon trying to force it's way out any way possible.
He just got worse and worse, his lungs were deteriorating fast and we literally were standing there watching him die!
It got to the point where we couldn't keep his sats above 50% despite trying everything and they were dropping fast. We brought Bryce in to the hospital to say goodbye..
We rang to query Ecmo lung bypass again but Dylan is not a candidate because of his chemotherapy so we were fast running out of options.
An urgent X-ray was requested, he was turning blue and his heart was giving up.. but before the X-ray arrived one of the consultants decided not to wait any longer and stuck a needle in his chest above his heart with a tiny tube into a cup of water!!.. Air started gushing out FAST!!
His sats went up to 80% so she quickly sited a proper chest drain despite him already having one in both sides. X-ray arrived so we checked and sure enough air on the other side too, it was finally collecting somewhere we could deal with it!! Another chest drain number was put in lower right hand side..
Fluids and adrenaline were given and slowly slowly everything calmed down, his heart rate, his blood pressure, his 02 sats.. I felt like I could breathe again!
He has remained stable today despite a few hiccups, this means he isn't getting any worse. We are struggling to keep his O2 sats above 92/93 at points still but his lungs are very infected and compromising the little healthy tissue he does have.
I'm not sure entirely what the future holds, he is either going to fight off this infection and improve or he is going to gradually deteriorate, hopefully the first of course! As parents we need to find a way to balance out being positive and staying realistic and I think that is the hardest part of all of this. We feel in complete emotional turmoil and completely helpless, jumping at every change on the monitor, second guessing every thing we see and even looking for problems that aren't always there.
He is our baby though and all of this is so scary, I wouldn't wish it on anybody and I feel for the other parents on ICU and Oncology, and those all over the world having to deal with the awful reality of a child with a life threatening illness. My heart and my hope goes out to every single one.. <3
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