The plan for today was to do his Lumbar Puncture (which they did) and then to turn off sedation and extubate him.. this did not happen. We haven't had a good day, the chest drains have been very temperamental at points, his oxygen requirement has gone up and down as has the CO2 level in his blood and his heart rate. His lungs just aren't working the way they should for whatever reason and it is so worrying as this is the point last time we were told things "weren't looking good".
We still have no conclusive result on his infection cultures but you can see on yesterday's CT scan that it is all on his lungs (pneumonia) which won't help this situation at all. It has also messed up the CT scan results so we cannot compare them very well at all which is a shame.
I can't help worrying that maybe this is too much for his little body and that he is just going to give up! I know how strong he is and that he will fight it the best he can but I am just so scared..
I handled Friday fairly calmly despite how scary it was, and even yesterday but today it has just hit me like a ton of bricks. He is so fragile, there are so many tubes and wires and it is just overwhelming to be back in this situation again. I can't fully express what it is like seeing your child in a life threatening state.. knowing the machines are keeping them alive so they can fight, knowing the bleeps and alarms off by heart.
He was doing so well previous to this infection and I just want to scream! People should not visit the hospital if they are sick.. and I am so glad the nurses and doctors picked up on the lady coughing away in the kitchen and sent her home yesterday or I may have lost it! When your child is 'medically fragile' you just want to wrap them in cotton wool but you can't, you'd think however they'd be fairly safe from infection in a hospital..
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