MONDAY UPDATE: We are going in to SS tomorrow for 12 noon. Hope to have our normal review, skull xray (making a helmet to help reshape his head) and then have his GJ tube changed in radiology. It should be a straight forward procedure without anaesthetic, so no need to stay in.
On Monday afternoon Sam started getting a bit grizzly. Our lovely RN that works in our home was quick to notice other signs like urine starting to smell more etc, and we feared for another urinary tract infection (UTI) in the offing. I was really stressed by this, as having had them so often, I knew that in about 2 more days Sam would have a high temp and need to be admitted for a week/s for IV antibiotics. Francis was away for work (see further below for more) and Pete & Jude (bro and sis'n'law) were flying in on Tuesday night for 4 days. They hadn't met Sam yet and I was so looking forward to having them to stay. Tuesday morning the signs looked even worse, so I took a urine sample and dropped it in to the local lab for testing. I called Starship and told them what I had done and asked if they could fax out a change in meds to try and nip this in the bud. They were reluctant to do this and wanted me to come in so they could examine Sam - this meant going to ED, being seen by the ED Doctor, waiting to see the SS house officer before seeing the consultant... ie atleast 6 hours waiting for nothing. I explained that there was nothing to see but a smiling boy, the urine was at the lab, his outputs were the same, I was home alone and guests coming and I didn't see the point in heading in. She was going to talk to the consultant and see if we could do it differently this time. I got off the phone and burst into tears - I was so annoyed at the situation, fed up that we'd only been out of hospital a week and it looked like I could miss out on hanging with my bro, angry at God and miserable. I sat there and read our family memory verse for the week: Isaiah 46: 4 'I have made you and I will carry you, I will sustain you and I will rescue you.' and I begged God to do something.
Well, about 3 mins later I get a text from Francis from the Solomon Islands. He was having breakfast with Sam's main urinary surgeon! Mr U is an amazing genius and lovely man, who was spending a week with a surgical team in the Solomons doing surgery and training local drs.... and he happened to be staying at the hotel Francis was! So next thing I'm getting a text and an email stating that Sam should go straight onto a different antibiotic immediately and that an admission wouldn't be needed! Now my tears of misery are gone and I'm crying because I'm so totally in awe of how God orchestrated this. I call the hospital back and tell them what Mr U has said over coffee with Francis in a different country (!) and also forward them an email with his rationale/info..... so in a couple of hours time a new script has been faxed to our local pharmacy and Sam is being treated for a UTI. It was a precious lesson that God is not limited by our systems and structures and that without struggles we wouldn't get to experience amazing things like this.
The girls and I had such a fab week with Pete & Jude. Pete, for me, is like Sam in so many ways. By that I mean I admire him greatly as he faces the challenges his life has thrown at him, and he is nearly as good looking. Nearly 10 years ago he had a brain tumour and was told he had 3 - 6 months to live. His life, and his familys, has never been the same since then and he lives with daily limitations, but his courage and joy are a huge inspiration to Francis & I as we've help Sam face his challenges. It was very lovely for Pete and Jude to meet our little battler and to have 4 precious days of fun and laughter together. The girls were treated to a day off school as I figured memory moments were more valuable in their life than a few maths numbers... so we had picnics and walks, toffee pops and pavlova for breakfast, dvds and dinner, late nights and ate and laughed and it was just a very very cool week. So totally different to how I was stressing it would be on Tuesday morning.
This week sees Sam hopefully getting a smaller GJ tube inserted on Tuesday (possibly day procedure only) and getting a standing frame on Friday.... that is very exciting!
'Thank you Lord for the many great lessons we have learnt this week, thank you for sustaining us and showing that you do carry us through the tough times. Thank you for family and laughter and the best Indian curry I've had in a long time.'