Our bodies are complex and each system is interwoven with many others... so when one system is challenged with Sam it seems to topple the next system... and the next... and the next..
On Wed a Multi-Disciplinary Team meeting was held - 2 Surgical teams, Gastro, Respiratory, Home Care Team and Family Options (funding). There may have been more, but I chose not to go, as the issues with Sam are all new to me: lymphatic systems, lung/thoraxic etc, and I was happy for the experts to discuss and get back to me. The teams are thinking hard about what further investigations need/can be done to help them glean the information they need to formulate a plan to help Sam.
Sam has bounced back after the surgery, and if there were no other issues we could have been discharged today, with just a catheter in situ for the next 3 weeks. This in itself would have been quite something to manage, as I'm not sure we would have coped having a urine leg bag on during school.
However it is the challenge of his lungs, fluid imbalance and nutrition that is very difficult. Tomorrow Sam is booked in for a nuclear medicine study - a substance will be injected into the spongey pad in the base of his foot and under live xray they will trace how the lymphatic system copes and where the fluid flows. It will be uncomfortable and frightening for Sam as it is not done under sedation. The hope is that the flow will show up any obvious 'holes/breaches' which may then have a simple surgical fix. We have been warned that sometimes nothing spectacular is seen.
If there isn't anything obvious, it may mean playing with various meds, removing the chest drain and helping Sam's body get back to an equilibrium - this could be very slow and long and would need to happen in hospital. So as are near the end of Week 4, we are uncertain if we are near the end, middle or start of our stay. As I was updating the girls, I was waiting for the usual groans and eye rolling... when Miss 15 pipes up, 'Well the good news is we get yummy food!' Some very kind people have been dropping in meals and they also happen to be far superior cooks than me, so the girls seem quite chipper at the prospect of a few more weeks of 'meals on wheels'. I try to get organised and I use the crock pot and pre prepare lots of food. I am also trying to teach the girls self sufficiency with some cooking skills. One day 2 weeks ago it turned pear shaped and I got a call from a distressed Miss 13 who had boil dried potatoes and a charred pot and smoke filled room was the result.... so they do really well inspite of the upheaval and we continue to be thankful for them and proud of how they adapt to this life. We are so appreciative of the practical support we receive - Thank you so much!
Sam continues to entertain who ever enters the room. Yesterday he was very sad when his school friend fell ill and was unable to come for the booked visit - he was sobbing and so sad and hugging me. The gastro team walk in and with their medical heads on look concerned, probably assuming that a tube had been pulled or he was in pain. I explained that Sam was just disappointed. Sam pipes up, 'Is that the same disappointment that you feel when you fight with Dad?... you know how you argue lots and you are disappointed?'. It was hilarious, and I explained that we don't 'fight' but creatively discuss.... and yes we do feel disappointed when we don't agree. It was a very funny moment.
The respiratory team walk in about 30 mins later and are explaining the intricacies of Sam's chest drain to me and the problems they have to solve. The consultant turned to me and said, 'If I put a drain in you. you too would leak lots of fluid as it is the point of no resistance'. Sam chirps up, 'Why would you need a drain Mum?' I said, 'You have lots of drains, why can't I have one?'. Sam said, 'Cos we are different.' 'How are we different?' I ask. 'You have boobs', Sam replies. Sam was looking confused as laughter filled his room, because in his eyes he had just stated a fact!
We are trying to get Sam sitting up and standing/walking as much as possible. His mobility has taken a hit after a week in bed. He has a great little chair and a room with a view, so he has done well to be up with tubes/pumps/poles arranged around him.
Last night I slept at home - it was so quiet! I am home again tonight with the girls and it is so nice to be with them.... I have missed them.
Tomorrow is a big day in Sam's world - we are hoping and praying for: Sam to cope with the procedure; for clear images to help the teams know what to do; for a treatment plan; for Sam to continue to be happy and peaceful stuck in his small room; for ongoing good dialogue between the many teams that work with Sam.
Thanks so much for reading. XX