They say 7 days is a long time in politics, well it seems it can be even longer and more eventful when you’re Edward Sharp.
We left ICU last Monday afternoon and after two very lethargic and sleepy days (Ed, not me) on the Variety Ward along with an eventful night with his oxygen requirements we landed back in ICU last Wednesday afternoon.
I’m aware I reported in my last post that the week before last had been pretty rough in terms of bad news and emotions, last week trumped in for sure. With still no source of the bacterial infection little Ed continued to remain tired, lethargic and extremely unwell. By Wednesday afternoon his Carbon Dioxide levels (Co2) were almost 90% (normally meant to be down around the 30-40% level) and his oxygen requirements high on the bi-pap breathing machine, it’s actually called a V60 but more on that later. With confirmation from both his Gastro Doctor and Respiratory Doctor that they had seen strong evidence of his NPC progression in the liver and lungs, things were not looking great. At one stage there was even the suggestion that neurologically he may no longer have the ability to expel Carbon Dioxide when breathing and would most definitely require a full-time bipap machine to assist him breathing but fortunately this theory was short-lived. All of this so hard to take when he was also so tired and unwell.
Most of the time I’m able to box and leave on the top shelf (just within reach), the reality of probably what lies ahead for our Ed, live in the moment and enjoy all that is on offer. But last week the box was definitely down and wide open and we had to confront head on all of the challenges this comes with the potential reality.
Thursday morning saw a family meeting with all of his Specialists, and its never good news when you get all of those people in the one room. As we have heard so many times about our Ed they admitted that yes, they didn’t know exactly what was going on but whilst there was evidence of Chronic lung disease and some progression in his liver they were still confident that this 2nd visit to ICU was a result of an acute episode probably caused by a virus on top of chronic lung disease. They were confident that with breathing support he would settle and return to his previous base line oxygen requirements. I’m usually the eternal optimist but still remained a little apprehensive about this prediction. His Metabollic Doctors were going to continue to look into the possibility of using Cyclodextrin and his Respiratory Team were going to consider a Complete Lung Lavage. We just had to wait to see which was he was going to go from there.
Friday there was little change to his condition, although I had managed to put things back on the lower shelf and felt a little better about it all. Over the weekend our little guy brightened each day and by today (Monday) he was almost back to where he was a few weeks ago, charming the staff in PICU with his cups of tea, free hairdressing and cheeky ways.
At this stage it doesn’t look like the Cyclodextrin will be happening, basically due to the inability to get hold of the drug for the time being. However tomorrow afternoon they are going to perform a complete Lung Lavage which will involve carefully washing and flushing out his lungs. In order for this to occur he will need to be intubated and ventilated ( http://en.wikipedia.org/wiki/Mechanical_ventilation) for both the procedure and 24-48 hours after depending on how he copes.
Obviously this 2-3 hour procedure doesn’t come without it’s risks, bit it is hoped that once he extubated and over a period of few days weaned down off his bi-pap machine that in the short-term he will no longer require oxygen during the day and hopefully just c-pap at night. Yet another first for our guy as it’s the first time the procedure has been done at this hospital as it’s more commonly done in adult patients suffering from Pulmonary Alveolar Proteinosis (don’t worry I had to Google it too-http://en.wikipedia.org/wiki/Pulmonary_alveolar_proteinosis)
Will keep you posted with his progress over the next few days but I’m estimating we are at best 5-7 days in ICU to recover from the procedure. We remain with hope, we have to as it’s not possible to see our little guy go through all he has been without this hope.