The big picture stuff:
Sam admitted with pneumonia. He required chest xrays, which confirmed he had pneumonia BUT also showed that his central venous catheter (which we use to hook him up every night for his TPN) had migrated into a smaller vein. This meant it was not usable and needed changing, but couldn't until his breathing was ok to cope with an anaesthetic. 3 days in a row he had peripheral lines put in that were used for a few hours and then tissued. This was tough on Sam and was decided to see how he would cope without IV fluids if we doubled his feeds into his gut by his GJ tube. So instead of being on 12 hours of 'milk' and pedialyte, he was put on 24 hours of both. He coped fine with this and that flicked a switch in our heads to get creative with his feeds. So after discussions with the team and whilst he is in here and can be monitored Sam has had 3 alternate nights with no IV feeds at all, but increased gut feeds and coped fine. This is HUGE news... this is beyond the realms of possible... this means that Sam will be for the first time in his life NOT dependent on TPN every night. This means that 3 nights a week we won't have to hook him up to an IV line.... I can barely contain my tears as I write this - this will make such a huge difference to his life and ours. This will give his liver a break, this will lower risk of infections... the benefits to him will be huge.
On Tuesday Sam had his CVL rewired. It took a lot longer than they thought. They tried going up through his groin/femural artery but both sides are so scarred from previous ops there was no access, so they went in through the neck. They re-jigged the same line, but as they were transferring him from the operating table to his bed he coughed and moved and his neck wound haemorraghed, so they had to intubate/put him back to sleep and stop the blood flow. So it was around 4 hours from pre-op to post-op and when I went to get him it was the usual 30 minutes of wrestling with him coming off his meds. They tried different meds this time to see if we can avoid his awfulness post op, but it didn't make any difference. That night I asked him if he remembered hitting me... he looked at me confused and said, 'but Mummy I love you'. Thankfully he doesn't remember it.
He was due to have his annual GJ change in a few weeks, so that was done on Thursday to make the most of our time in. Francis thankfully was with him for that, as I was so tired and not sure I would cope with another wrestling match when I am so physically and mentally tired - Sam is 23 kgs, so when he is aggressive it is a challenge/work out.
I read Jeremiah 32 this morning - in the midst of people's stubbornness and warnings, there pops up this (v 19 & 20): 'Great are your purposes and mighty are your deeds. Your eyes are open to the ways of all mankind...'. This leapt off the page at me - nearly 3 weeks ago we ended up in here and disappointment piled on disappointment as his lungs took a hit, as a random xray showed up something else that we didn't want to know, that his illness slowed down treatment, that problems meant that Sam couldn't get his IV feeds.... they all seemed like problems and disappointments, but when I look back at the big picture, if these obstacles hadn't happened we would not have ever tried Sam without IV feeds and known that he could cope with out them. I feel so grateful that God sees ALL MANKIND.... all of it is in His hands. I am so limited by my mind and awareness and lack of intellect and tiredness - He sees me, He sees Sam, He sees the staff here... He see ALL of mankind and his purposes are great. This has been such a great admission for Sam, for my faith, for hope, for renewed relationships with other parents on the ward. And yet I don't want to be here. I want to be home. How much do I miss out on wishing I was in a different situation or space? How much do I lose out on due to my stubbornness, impatience, trying to control life?
He sleeps so peacefully, always with his hands like this.
'Lord forgive me for thinking I know better than you when it comes to Sam and his care, forgive me for so often wishing I was running someone elses race and not mine. Thank you that your greatness, purposes and awareness do not fluctuate at all, even when I do. Thank you for your hope and peace and forgiveness that is new every morning and can not be depleted like my fragile human levels do.'
'Thank you for progress and for this admission, thank you that my girls have had a great week on camp and with friends, thank you that you watch over them too, thank you for Francis that helps keep this all together too and patiently helps me plod on. Thank you for the many people that have supported us this admission - for Nana that has hung out with Sam in hospital to give me a break, for the ever faithful Ange, for the Cairns family for taking Candace on holiday, for you reading this that care enough to think and pray for us'
Sam still needs a little oxygen at night, so that is keeping us in still. Last night he was on 1 litre and had a 12 hour oxygen reading test. Tonight he will have 0.5 l and repeat the test. Then hopefully Monday we can head home, one day short of 3 weeks, having had a bit of an overhaul and with renewed optimism for Sams health and opportunities.
I hope you can see beyond your physical situation and take hope that there is a God of greatness that is aware of it all. X Shirl