I had planned tonight to write about how great Sam has been doing and to update you with his progress and let you know all about the great 5 days we had down in Rotorua courtesy of Ronald McDonald House Charity....and I will do that at some point, BUT today hasn't ended as I'd planned...
At 11.30 I had Sam in SS for a gastro review. He weighed in at 13.5kg, he is currently on 1040 ml of enteral feeds (65ml/hr X 16 hours) and 355 ml of TPN/IV feeds (over 14 hours). In light of the increase of milk that he is coping so well with, it was decided that this Saturday we will start weaning him off TPN - I KNOW, TOTALLY AMAZING! So on Saturday morning he will finish his TPN at 8am, his central line will be locked with strong heparin and he won't go back on TPN until Sunday 6pm - WOW. He will however still need some extra fluids, so the pay off is that he will also have to have 4 hours of pedialyte after his enteral milk, so he will in effect be on his enteral pump for 20 hours.... if you are still following well done, if you gave up yonks ago trying to understand, just know it's really great progress. They are also going to reduce his TPN on the other nights to allow for the increase in milk over the past weeks, so he may be down to 12 or 13 hours - any free hour off a pump is progress and helps in Sams mobility. So we start with one night off a week, keep working on increasing his enteral feeds and then the plan is to take him off another night when the time is right and so on. At the end of the review bloods were taken from his line to check and I merrily floated home looking forward to this weekend with added delight.....THEN at about 4.45 I get a call saying his potassium was very low, they were concerned for his heart and he needs to come in to Starship asap to have a potassium infusion overnight. So from euphoria to 'stink' in about 3 seconds, then no time for that anyway as I try to figure out what/where/how etc, as Francis is in Australia this week and a small matter of Sam's 2 sisters....
It's now 10.30pm and I've been in CED since 7, the girls are having a sleepover with friends (who have easter eggs) and are much more fun than their Mum, so they are totally delighted and coped well with the upheaval - possibly too well! Sam has finally given in to sleep after having an ECG, blood and urine samples taken and is hooked up to his infusion and his milk feed...and I think we are just waiting for a bed on the ward.
On the way in to hospital the sky was amazing - intimidating thunder clouds jostled with blue sky and puffy white clouds, with rays of sun shining through - looked so powerful and I felt so small...and I felt thankful and peaceful as I relaxed in knowing my place, small and reliant on God, whom is bigger than all and is even with little ol' me. I leave you with this amazing bit of the bible that blows me away that I was reminded of on Sunday from Isaiah 40
... Look up into the heavens. Who created all the stars?
He brings them out like an army, one after another,calling each by its name.
Because of his great power and incomparable strength,
not a single one is missing.
27 O Jacob, how can you say the LORD does not see your troubles?
O Israel, how can you say God ignores your rights?
28 Have you never heard? Have you never understood?
The LORD is the everlasting God, the Creator of all the earth.
He never grows weak or weary.
No one can measure the depths of his understanding. He gives power to the weak
and strength to the powerless.
30 Even youths will become weak and tired, and young men will fall in exhaustion.
31 But those who trust in the LORD will find new strength.
They will soar high on wings like eagles. They will run and not grow weary.
They will walk and not faint.
Shirl & Sam signing off. X