Q: How can you tell you have been in hospital too long? A: When your bookmark is a colostomy bag! This week I was reading beside Samuel's bed, when his alarms starting going off and 2 nurses rushed to suction him. I quickly tried to move out of the way, but not wanting to lose my place in my book grabbed a flat object from the nurses station stuffing it in my book. After Samuel was settled I went to return to my original place and picked up my book.... to find my bookmark was a colostomy bag! The bizarreness of it hit as particularly hilarious and I felt the urge to snort out loudly with a belly-laugh..... but quickly managed to contain myself considering my surroundings and considering the other families huddled around their loved ones. My stifled guffaw subsided into a weird smirk and this may be the reason the social worker seemed to pop in an awful lot in the latter part of the week - I'm sure the nurse referred me!!!
But insanity aside I do recommend 'The Guernsey Literary and Potato Peel Pie Society' as an excellent read - thanks J & P. Such a lovely book.
Sam did not cope off his ventilation tube since the last blog. He was on CPAP but was gasping and in difficulty. At around 3am yesterday they intubated him again, but it took 6 attempts to get the tube in by an experienced doctor, as Sam's airway was very swollen. This is possibly due to acid reflux from his stomach. Yesterday we had a meeting with the ICU Intensivist (consultant Doc), Gastro specialist and nurse as well as his daily nurse. They were feeding back from a multi-team meeting the day before to outline a plan for Sam's care. It was a really worthwhile meeting and helped us to think through some more tough issues and to hear their thoughts on treatment and interventions... or not as it may be. It was useful but also hard as with each new complication looms a possibility of organ failure that is untreatable.... so there were plenty of tears yesterday too as that reality seeped through our brains.
Samuel's wounds are both very open and red and pusey, but with daily dressing and good care, plus 3 types of anti-biotics they aren't getting any worse. His white blood cells have dropped slightly today which is a good sign, as they rise when fighting infection. He's had a quiet day sleeping and hopefully gaining strength to fight this horrible germ. He still has a lot of white secretions from his lungs, but thankfully today they seemed to be thinner and milkier than Friday, which all are hoping means the infection hasn't spread to his lungs.
Clearly he can not breath unaided due to his swollen airway, but steriods that are normally given to reduce swelling can't be given whilst he's on these antibiotics... so it will be a slow process of giving him good care and reducing each risk one by one. He will be in ICU over the weekend and into next week.
I'm sleeping at home with the girls and Francis is with his son over the weekend, but we have lovely family time together in PICU during the days and the girls are so happy hanging out in Starship.
We just wander on each day knowing God's strength and hopefully wisdom amidst complex issues with Sam.... through the tears and the laughter... somewhere in there life is becoming 'normal' - well 'normal' for us.
Best wishes, Shirley