Saturday, September 21, 2013


Tonight is the first time we have been a family under the same roof since August 25 - it feels great! We are all weary, Sam is excited to be home, but has a lot to recover from. He is not able to walk, due to having to catheters in his bladder (with balloons of water holding them in), so he is uncomfortable. He is also experiencing really unpleasant bladder spasms. There are two effective medicine available to treat these symptoms but Sam can't have either due to the side effect profile and his underlying condition. This means that he can be sound asleep or happily sitting and playing and he starts screaming in pain as he grabs his groin. It is random when and how often it happens, but it can last 1 - 4 mins depending each time. The catheters are due to come out on October 2, so until then it will be trying to help manage his symptoms and help him to keep active so his leg muscles don't waste away. He hasn't walked in 16 days since his operation. On Monday we are back to Starship as he has a check up with gastro team to make sure he is back to normal weight and stable in himself. That is at 11.30, then at 1.30 we head to radiology where he is having a barium contrast study on his large bowel. The point of this is to see how his large bowel is operating. If there is a good result the team are talking about connecting his large and small bowel back up (hasn't been together since he was 12 hours old!!!) to see if he can't operate as normal. This is a huge step and right now, tonight when I am tired and just wanting Sam to get over his last big ordeal, I'm not sure what I think. I want what is best for him long term, but also conscious he has had a really rough winter and I would like him to have some time to get strong again. Anyway, we were all glad to be sitting around the same dining table, thankful for the various other dining tables that were kindly set for the girls during the past few weeks. Much aroha! Shirley


Eric Dufour said...

Have rest at home all together, you so much need it !
Be richly blessed.

Eric Dufour said...

Enjoy being at home all together, you so much need it and deserve it !
Be blessed in Him.

The Dockers said...

Glorious. Much love, Fi and team

Gayleen said...

Hi it's Raewyn's friend Gayleen here. I read an article about a sick wee boy who'd been through Starship (Woman's Day Sept 16 issue pg 34) and it mentioned that the parents had constant hassles with the hospital at every admission so they had a sticker placed on his file (which is still stuck there). The sticker reads "Listen to the parents they know what they are talking about".
Perhaps you need to get these printed in a nice fluoro yellow or pink colour :)