Following recent growths of the New-Twattish-Microbastard (NTM infection) and the Frickin Fungus (aspergillus) in his lungs, latest cultures have been clear, which is really promising, as were the CT results (and who can argue with the doughnut of truth?). This doesn't rule out the scary NTM bugs, but it means we can hope while we wait for further results - cultures for this bug take 6 weeks, and we supply plenty of sputum as requested, so results come in on a rolling basis. A clear result doesn't mean that he has cleared the infection; it just means that the sputum supplied from that particular cough doesn't contain that bug, and lungs are vast. We need a lot more clear results before we can be sure.
However at clinic today, Isaac's lung function was down, considerably. Not exactly a shock; he's been crackling, coughing and looking pale. Despite being on Cipro (the big guns of oral antibiotics), nebulised antibiotics as usual, double nebulised DNase (which helps break down his sputum) and adhering to his increased physio routine perfectly since coming out of hospital (including his new BiPap, which forces air into his lungs); his pesky pseudomonas infection is having a party in the face of all his efforts - pretty fucking rude if you ask me.
We took a long dog walk together at the weekend, and he had a surprising change of heart about the portacath, for which he is scheduled surgery for early in January. He is a young teenage boy, and understandably the idea of having a permanent device fitted in his chest wall would be a constant reminder of CF that he just doesn't want. And who would? But the benefits really do far outweigh the arguements against it (his being that he may one day want to pick up rugby again, or boxing, or some other kind of chest poking sport, which are not recommended with a port). But sadly his venous access is so severely limited now (meaning his veins are ruined from years of IV antibiotics and tests) that they will be searching for veins in much more uncomfortable places than his hands, arms and ankles next.... A port will mean that IV drugs sail through in quicker time; getting him on IV's to begin with will be much easier as we will have immediate access every time, rather than waiting for the doctors to insert a long line; and he gets to avoid painful repeated stabbings.
I'm not exactly sure what I said to change his mind, but I'm glad. I explained that I no more want a lump of metal in his chest than he does, but ultimately, I know it's for the best. The doctors are our experts, and I trust our team. It doesn't stop me wishing it wasn't so though.
Our hope now is to stay home for Christmas, and as sad as I feel today, I think we will be OK. As we are so close to the port surgery, they want to see if he can hold out until then, avoid the venous access pain, and do two weeks of IVs following the surgery. This will be his third course of IVs in 6 months, which is worrying in itself. The hope for next year is that we can limit this to four lots of planned courses per year (that is 4x two week courses of IV antibiotics, most of which will be in hospital, but some of which we hope I can administer at home) to keep on top of his infections better.
For now, we continue on the Cipro, hope for good test results, do extra physio, and add in regular ibuprofen to help reduce his inflammatory response, and enjoy Christmas at home, together, before an early New Year back in hospital.
Have a wonderful Christmas break if you are having one, wherever you are x
PS- I just read this report. CF parents, let me know what you think too? x
