Catherine has fought urinary tract infections her entire life, even before we realized she was suffering from them. The only signs we get are quickly spiked fevers and severe lethargy. In January she got a serious UTI the week after her major bladder surgery. She was hospitalized for a week and was in pretty bad shape for the several days. It was quite scary.
Last week, on Robby's birthday, she suffered another UTI. She was fine all morning, active and playing. At lunch she seemed a little sleepy. By 1:30 p.m. she was unable to hold her head up and was burning hot. We were at a Preschool Music Class at Camp Sunshine.
I took her to the emergency room, where she had a 102.1 fever. Fortunately, her fever responded quickly to medicine and they gave her a broad spectrum antibiotic through an IV. They took a urine culture and we met with the on-call urologist. He told us that every person who is catheterized regularly will always have bacteria in their bladder and urine. These are called "colonized bacteria" and are fine, until such time as her body cannot fight them.
When the bacteria grow too strong, she will exhibit other signs of an infection, like a fever or lethargy. He said that no matter how clean we are, every single person who is regularly catheterized has bacteria at all times and continuously battles UTI's.
A few days later we met with our regular urologist, who decided that she had become resistant to too many bacteria and referred us to an infectious disease specialist. It used to scare me when a specialist refers us to another specialist. I always took that as a sign that the situation was pretty serious. But now I am grateful when a doctor basically admits that the situation is beyond his/her scope of knowledge and ability and wants to Catherine to get more specialized care. It wasn't much of a surprise either, because we were well aware of the fact that Catherine's little body could not fight all these infections on its own. We knew that we needed a better solution, a more preventive solution. So, we met with an "infectious disease specialist" today.
The infectious disease specialist is starting us on a rotation of prophylactic antibiotics. We will alternate between two different ones, using one for seven days, then switching. If this works, that is all we will do.
If she continues to get UTI's with the rotational system, then we will do daily bladder cleanses. This is a more targeted, stronger solution. Apparently we would make a mixture of water and a powdered antibiotic. Then we would empty her bladder of urine and inject this solution into her bladder. We would wait ten minutes and then withdraw the solution back out, which would mean we are sucking out all the bacteria with the solution.
I asked why we didn't just switch to the strongest solution first. The doctor said that her body contains bacteria which is trying to grow. It will mutate inside her body as it needs to in order to survive. If it has a minor antibiotic to fight against, it will mutate a little. If it has a major antibiotic to fight against, it will mutate a lot. Then, when it finally "wins" and infects her whole body, it will be much more difficult to treat.
We have never rotated antibiotics with her, so I am hopeful that this will work. I am also grateful to know that there are other solutions available should we need them. We have also invested (and I mean invested!) in some bottles of surgical prep soap. We have to reuse her overnight catheters because our insurance will not give us thirty a month. We are trying to get more, but until then we have to wash them and reuse them.
We have tons of regular catheters, so we do not have to reuse them. Robby found a Facebook page for "medical supply exchange." He was able to get hundreds of regular catheters for just the cost of shipping (sadly it was from a family whose child had passed - insurance companies will not let you return items, so they had tons of extras). We are looking for ways to obtain more of the overnight, balloon catheters. Our urologist assures us that it is OK to reuse them, but in my dream worls we would not have to.