You never know what life will throw at you! In 2004, my stable life with two healthy daughters was rocked to the core when I gave birth to William, a little boy with complex needs. Life was never the same again. We've come through living in hospitals, a small bowel transplant and coming to terms with Asperger's Syndrome and I'm finding life all the richer for it.
Friday, January 26, 2007
Battles with the old enemy...
We are still in hospital, battling with our enemy of old - the dreaded pseudomonas! When Wills had a CF diagnosis, this bug was ever present in large numbers in his lungs, causing a lot of worry about his prognosis. When he had his Nissen Fundoplication, to prevent reflux and his gastrostomy inserted to allow us to drain his gastric aspirate, we learned that the pseudomonas in his lungs were coming from his intestines and getting into his lungs in the reflux. Now, it seems his intestines are far more colonised with pseudomonas than previously and the little blighters are crossing the gut membrane into his blood, causing line infections and septacemia. He has had 4 different species of the bug in his line during the last few weeks. His guts also seem to be colonised with fungal infections that are also getting into his line. This is all more than slightly worrying. He is going to Chelsea and Westminster hospital on Monday to see if he needs a new line and also what can be done to keep these bugs at a safe level - they are unlikely to be killed now, as one doctor put it, once you are colonised, they are yours! When gut motility is slow, these bugs just sit there breeding. Most people would be able pass any such bugs quickly through the system without giving them time to breed. The standard way of "sterilising the gut" is to put large doses of antibiotic in daily for 3 weeks, then off for 3 weeks so on... This would be OK for a child with slow gut motility. However, William has no motility to speak of so the antibiotics would sit there, causing problems in their own right. So, as well as deciding about the fate of his line, next week will see discussions about what we can do about this. William's gastric aspirate has been getting muckier and muckier and more and more in volume. His stool output has gone down, suggesting the yucky secretions are sitting around longer. It could be that this is the beginning of another step closer to Wills needing an illiostomy. So, we are off for a review and some more discussions of "what next?"
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