The year of the chest.

While 2015 and well into 2016 were the years the digestive problems, with repeated admissions for DIOS (distal intestinal obstructive syndrome) and continued problems with nausea and vomiting, 2017 was most definitely the year of the shitty chest. While he has grown the bacterial infection he has in his lungs (Pseudomonas) for many years now, we used to be better able to keep it at bay by just occasional courses of IV antibiotics and a whole heap of oral and nebulised ones, but we are now much more reliant on the toxic IV drugs to battle this bug. 

His surgery to implant a portacath (permenant IV device, in his chest) was scheduled for tomorrow, and we had pre-op today. However the surgery was postponed (Addenbrookes is one of the hospitals in the news today, declared as in the midst of a major incident, as they battle wards full of flu and the noro virus). We now hope to have it scheduled for next week or the week after, so still headed in for the pre-op chat today. Because we were going in anyway, I spoke to our CF nurse and as he is still coughing despite four weeks of cipro, she asked us to pop in for lung function tests. The news was neither surprising nor good. 

The plan over the last few weeks was to hold off IVs until the port was in to avoid the pain and hassle of trying to get a line in again, and as we seemed so close to this date (and so wanted a Christmas at home) the doctors wanted to wait. But today, with him still so symptomatic and knowing the port is postponed (and could be even further, because let’s face it, the NHS is in crisis) we can no longer delay. So armed with only the clothes we came in wearing, we found ourselves back on ward D2. Isaac was pleased as we got one of his favourite beds, overlooking the garden, and despite his venous access being so pants, he already has a longline in - first time! We very much need this one to last until the surgery now, as I can’t believe we’d be so lucky a second time. 

So we are back in a day earlier than we had thought we would be going in, and a frustrating delay for the port, but it’s certainly been better knowing that we were coming in for planned IVs anyway; the bags were already half packed, the time off work was booked, and the girls were prepared for the news (no tears at all today - I can’t tell you how different that is). Isaac is in a much much better place with his health right now than for his last admission - despite the coughing he has a great appetite, he is fit again, happy and rested after a lovely break at home. 

Our hopes are; IVs this weekend, lung function starts to improve, surgery goes ahead.... and then we go home to finish his two weeks of IVs at home, through his shiny new port. 

I will let you know how we get on, but so far, so good, still smiling x 

Pictures from just a few days ago, out on his Christmas present.