Sunday, June 29, 2014

Day 27.....

... And we are still in. His temp spike was the start of a UYI, so IV abx were started. He seemed to respond well and I did all the training so I could take him home and administer the drugs myself...... We we're all packed up last Monday evening ready for an early departure on Tues. On Tuesday morning at about 4 am I was up helping Sam out with a vomit when I saw his bulging poop bag .... Full of suspiciously awful looking goop.... So it was emptied and filled up in another hour... And at that point I knew we weren't going anywhere! Samples were sent but it hasn't come back with any culprit (C diff or Rotovirus etc) .... And it isn't clear why he is having such high losses. So we are still in, although we did escape for a few hours today to Aunty Tors house for a fun family Mexican themed meal and afternoon. He really enjoyed getting out and the girls loved seeing their bro. The week ahead sees us turning into parents of a teenager! Jasmine is excited about Wed but also anxious about what her birthday week will look like and which parent will be around for it. We always try to make a big deal about their birthdays as they put up with so much chaos and we are so proud of them.... So we will be trying extra hard this week to juggle hospital and making sure that Jas is made to feel extra special and loved on her special day. Hopefully tomorrow there will be a chance to put a plan in place to head home - school holidays start in a week and it would be so nice to be home together for that. But for now it is Sams gradual and consistent weight loss and delicate fluid balance that is keeping us in. He enjoys daily excursions to the ward playroom and we can get him painting if the 'paintbrush' is a car! He wheels the car through the paint and onto the paper and lo and behold it's called art. I might list it on trade me and see if we can make some money ..... Now u can tell we have been in here too long.

Thursday, June 19, 2014

To the pentouse

So it is 15 days post op and Sam is still in. The surgeons are happy that all is well and nothing more needs their input for now, so we moved from surgical ward up to the gastro ward -26b. We happen to have scored an ensuite (I can't find the complimentary bar tho!). Although the surgery has fixed Sams large tum, his small bowel needs to recover from the stress it's had over the past two months. It has been cooperation nicely and is now tolerating 23 ml/hr of milk feeds. Feeds are being increased 3 mls every 12 hrs. In the last 48 hrs we have been pleased to see his ilieostomy outputs are now looking and smelling like faecal matter and not just liquid. His gastro outputs are still too high and variable to consider heading home, but the H word has been murmured for possibly early next week - well that was mentioned at 5 pm today, but it is now 9.45 pm and we await the on-all Dr as Sam has just spiked a 39+ temp 😓😳😥😪😩 - That is 5 distressed icons representing 5 Davy's who are really wanting to all be together again. Hopefully whatever is brewing can be found and treated quickly.

Off to hold my boys hand and rub his tum - I will remind him of this when I am old and frail and roles are reversed - he doesn't owe me a thing, but I am sure it will bring me as much pleasure then as now. X S

Sunday, June 8, 2014

i AM 5!

Yes Sam is 5!  He had a quiet subdued day, due to being less than 48  hours post op... but he was loved and spoilt by the care team and had lots of visitors!  He had a play dough racing car cake and his room was filled with balloons and streamers.

The surgeons are really pleased they have given him back his ilieostomy as the large bowel was full of festering gluggy bile that was not going anywhere - hence his large round tum and very little excrement making its way out. He now looks so skinny without his bulbous girth!  The small bowel was not looking damaged as they thought it may have been - which is a real plus.  As I write he is now about 24 hours into GJ feeds - I think he is up to 15 mls/hr and every 12 hours they are increasing this by 2 mls.  So this is really good news, as it means we can hopefully start decreasing his TPN shortly, which means his liver can take a bit of a break!

His pain has been well managed, but the part of his lung that always seems to become compromised post anaesthetic has collapsed again and he is still on oxygen, having chest physio input and on IV antibiotics as he was spiking some temps.  It seems the team got onto this early with xrays on Friday that confirmed this.

He is tired - having big naps each afternoon, but now he is back to his warm loving funny self, albeit with lots of wires and tubes!  Francis has been with Sam all week so I could be with the girls sorting their birthday/school needs etc.  It's worked well, but with the new week ahead in hospital some more creative logistics required to keep us all afloat.  Jas is off to a week long sports camp tomorrow, so she is very excited about that!  I leave you with some photos of our big birthday and surgery week ... oh and he got a few more cars for his birthday, so he is most pleased!  A girl can never have enough shoes, A Sam can never have enough cars!