Today Simon had his 70th visitor to the PICU! That's right. The little man has had 70 visitors (many of them multiple times) since August 1 when all this mishegas began.
It's really so bittersweet to even think about. So amazing that so much love and support has come our way and so bitter to think about the situation that is inspiring so much love- not that there wasn't the love there when Simon was born and for the first 3 months and 23 days- it's just quite the tidal wave of love that we've been experiencing for the last 4 weeks.
Yup, today four weeks ago was when this all began.
And where we are today versus 4 weeks ago is also pretty amazing. Simon is stable and responding so well to his new regiment of anti-biotics. He's still on the Milrinone and will be through the weekend but since he's been weaned once, we're hoping that it should be a relatively similar wean again and that he'll just start over again with showing us that he's ready to stay off it. His BNP score was quite high this morning- that's the test that lets us know how distressed his heart muscle is and unfortunately the higher the score the weaker the muscle. Dr Patel was surprised once again to get that score given how alert and happy Shimmy was this morning when he came in before 'rounds. Simon is just a living contradiction. We had a lovely morning with smiles, page turning, lots of eye contact with visiting nurses and doctors, lively conversation, and even a solid poop and dream feed (just one nursing session and that was in his sleep).
AND
Simon's heart was pretty wrecked to start with and the staph infection just kicked him while he was down. We're technically still in heart failure and waiting to see some kind of improvement on an Echo Cardiogram after four weeks. It hasn't happened yet. It's more than likely that it won't for a long time to come if it's going to happen at all. We're still not sure what camp Simon's going to end up in- a) Full recovery b) Partial recovery or c) Needs a heart transplant to keep going.
Day to day is manageable. Today was better than yesterday which was better than the day before. It's the roller coaster ride I never bought a ticket for.
(We'll write more later about the price of this ticket)
Love to all
Laura
No comments:
Post a Comment