Thursday, March 7, 2013


Ok, so we were given the all clear to leave at around 8.50 yesterday morning by the surgical team..... then we were asked to wait as both the cardiac and respiratory teams needed to see us.  I wasn't sure why, but then at about 11.45 a lady arrived with the ECG machine again.  Hmmm, she was just following instructions, but Sam was not going to play ball and screamed and pulled and had a melt down so it was aborted and will have to be done another time....

So we waited and waited.... and then cardiac Dr came and explained that the xray in February of his gut (the one that revealed his CVL was out of place) also showed his lungs were in distress.  The ECG done last week showed an odd rhythm and he needs to have further tests.  Sigh..... sometimes ignorance is bliss!

So finally we escaped, but without seeing the respiratory team - I figure waiting 5 hours was sufficient and if it was urgent they could call me.... it's been 36 hours and no one has called, so am figuring it can't be that urgent.

Sam has a urine tube and bag flapping about himself which we have secured to his t-shirt with safety pins.  He's not loving it, but is getting used to it.

On Monday we have an 8.30 surgical review at Starship, where they will hopefully take out the vesicostomy drain and it will be back to what it was 3 years ago - intermittenly catheterising every 4 hours.  At 9.30 we have gastro review and at 11Sam has a cardiac appointment where Sam will be fitted with a heart harness - some kind of gadget that will record Sams heart for 48 hours.  So he will have that hanging around his neck and strapped to his body for 2 days - oh dear the boy is like a walking coat rack!
On Thursday we have an ENT review, so 4 appointments in one week, but thankfully only over 2 days.

Hopefully next Tuesday Sam will get back to kindergarten (which he loves and is missing and asking for each day!) and life can settle down somewhat after this recent glitch.  We are hoping and praying that heart/lung issues are easily resolved.  It's one thing to go backwards to having a vesicostomy, but I am dreading having to go back to lugging an oxygen tank around - and it will be a nightmare getting Sam to keep prongs in/on!  No point worrying about tomorrow, today has enough cares of it's own!  Great practical truth from God's word that helps me boot out crazy thoughts as they enter my head, as I want to use my energy on today and not what might or might not be....

It's lovely to be back under one roof!  Thanks for thinking of Sam. X Shirl


Anonymous said...

Following, watching, praying for you all. Heaps of love, Crawfords in UK

GDownes said...

All I can do is give you all a hug in my thoughts.... Thinking of you all.