Francis is frantically typing on his laptop behind me, trying to finish a masters paper, so I get the job of the Blog tonight.
I am writing from home, as today we moved back from NICU as Samuel is quite settled. It is lovely to be back amongst our stuff, having normal meals, doing the bed/bath routine with the girls.
Last night (after the blog entry) Samuel had a blood transfusion and today Samuel was weaned off his morphine, after the surgery of yesterday. He was extubated at 11.30am and has been coping on low-flow oxygen since. Mostly he had a very settled and uneventful day, dozing through his many visitors.
After the multi-specialist meeting this morning, the neo-natologist met with us to talk us through all that they had discussed about Samuels complex condition and options for treatment and his care. We talked through long-term options as this directly impacts decisions being made with his current day-to-day treatment. If Samuel is to live and thrive, he will need to have a multi-organ transplant and the impact of this would be huge for us as a family as well as Samuel. It is a complex issue that putting in a short blog would not do justice, but suffice to say that there are risks and costs on many different levels both physically for Samuel, financially and emotionally on us all. We agreed that we want to give Samuel every opportunity to fight on and receive treatment, knowing that it will be difficult and there is no certainty of success.
So we talked through step-by-step surgical interventions that Samuel would need to undertake, with the understanding and agreement that at every step we would stop and assess the impact on Samuel before we continued on, fully aware that at any point Samuel may not be able to continue. It was an open and frank discussion and we are so grateful for their honesty, insight and concern for Samuel.
With the above in mind, the surgeon would like to take a CT scan of Samuel's abdomen on Thursday (under general anaesthetic) to determine the best option for surgical intervention with his kidneys. Currently he has a catheter directly into each kidney, but it is of urgency to remove these (this was a temporary measure to relieve the pressure) as they are at great risk of infection and the underlying problem needs addressing. So he may have the surgery straight after this on Thursday whilst he is intubated, or possibly on Friday.
The deceptiveness of Samuel's illness is frustrating - when Samuel looks so well and has improved so much, yet internally he has so many problems and no easy solutions. Samuel has responded well to various interventions and surprised us all. At what point do medical interventions cease to be kind to Samuel? How will we know when Samuel has had enough? We have so many unanswered difficult questions which Francis & I agonise over. And there just are no easy answers, so we hope and pray that we will be guided by God, who has the big picture.