Tuesday, September 3, 2013

In Limbo...

Since I last wrote it's been a crazy few days! We were at home, just passing time, then on Sunday Sam spiked a 39.5 temp! He was miserable and I headed back to Starship after my trusty friend came and rescued the girls. He was sent for a chest xray as he was a bit crackly as it could have been another bug causing the temperature. His chest looked fine, but they had to keep us in with such a high temp and started Sam on I.V. antibiotics. Probably it was just another UTI. We hung out on the surgical ward and Sam was quieter than normal and very chilled just lying on his bed playing with cars. The surgeons have decided that they would like to totally close up the vesicostomy hole (where the urine should be draining out of, but hasn't been, but now his bladder is hanging out of). They said that his bladder is so large and floppy that there is very little muscle, hence why he's always struggled emptying it. Last Tuesday when they operated they made the hole as lose as possible to try and aid the expulsion of urine, but it was so weak the bladder popped out. They don't believe it's worth trying to do anything further at this stage, so want to do quite a major operation next Tuesday. So lunchtime today was 24 hours since his last temperature, so we came home with a week of oral antibiotics to hold us over hopefully til Monday, when we will head back in to get ready for Tuesday's ordeal. They are proposing to totally shut the vesicostomy and bring the ureter from his right kidney straight to the surface - ie, exactly like the left kidney functions. It will mean he will have 2 ureterostomies that will need to both be drained every 4 hours, but they are hoping this will stop the cycles of UTIs. This is a short/medium term plan and he explained the next part of the plan for a really major plumbing overhaul further down the track... but to be honest he lost me pretty early on in the explanation - due to my brain having too much information, not his ability to explain it. So Sam is home, albeit waddling with a very wide gait and in discomfort. He is such a strong wee man - just gets on with it, inspite of the discomfort. He still wants to play and get involved with what ever is going on, but is very limited in his movement and clearly hesitant to move - can't blame the wee man... he has so much to put up with. Tomorrow is day 1 of the feeding clinic as it was postponed last week, so as he is actually better being distracted, I think we will go and just see how he goes. He is happy sitting and pottering and I think the distraction of other kids and clinicians will be good for him. Thursday is another visit back to Starship, but this time with Candace to 'get her leg off', as we've come to call it. She is so looking forward to seeing her leg again, but she isn't so thrilled at the realisation it could be a bit slow to start with! I spent last night in hospital working on a talk I'm giving on Thursday morning at Elim's Woman - I love going back over the amazing 4+ years God has allowed us to live and for the amazing little man we have the joy of parenting with His help all the way. I leave you with 2 photos - 1 from last night in hospital and 1 from this afternoon on our friends back lawn.... our wee man, the amazing boy of courage.

4 comments:

Anonymous said...

Lovely to see the new pics of Sam and so sorry to read about how unwell he has been recently. He is a real little battler and you must be so proud of him. It's really difficult at times as we know only too well. Lots of love from Paul, Gemma, Abbie, Lewis and Jacob

Juliette said...

Sounds like a pretty intense couple of weeks, Shirley! Our thoughts and prayers are with your gorgeous boy and all of you...may Tuesday's op be as straightforward as it can be with a rapid recovery for little Sam. Lots of love x

viva said...

Sorry to not be at the ole ship at this time Shirley - thinking of and praying for you all.....has Sammy lost weight, ot just growing taller? Know that he'll be in good, safe hands in theatre.....

Lynette said...

Wow Shirley Sam has gotten so much taller by the look of these pics! And also lost abit of weight as well by the looks of it. He is such an amazing wee boy, such a battler...as are his parents obviously! You're all pretty inspiring with all the juggling of "life" that you have to do as it is so much more than a "normal" person has to do! May God Bless your family abundantly!!
Nigel, Lynette & Joel