After awhile you get pretty used to expecting doctors to tell you the kind of news you’d prefer not to hear…not necessarily horrible stuff, but discouraging stuff.
It has become a sort of an expectation of interacting with doctors that the news about Esmé will not be “great.” We do hear a lot of “good progress” type of remarks–many of which, I imagine, stem from our stubborn insistence to celebrate every little gain Esmé makes.
We also are used to the kind of news we received on a Children’s Hospital visit about 15 months ago. Our then-new urologist told us that Esmé’s kidneys were doing very odd things…a few stones growing on one side, extremely severe reflux and hydronephrosis on the other side, hydroureters (dilated urerters) on both sides…out of the blue we were talking about surgery or managing longer-term with daily antibiotics to prevent kidney infection, likely ending with surgery anyway.
The last time Esmé had surgery it was far less simple that it would be in most cases…she was six days in the ICU after what our insurance company qualified as an “ambulatory surgery.” (You can read about it that experience here, here, here, and here). So, after discussing with the doctor, despite the compelling case to do surgery quickly in a similar case for a “typical” child, we opted for postponing surgery for as long as seemed safe while protecting her with antibiotics. This would give her a chance to get bigger and stronger…and leave room for the unlikely event that her reflux would improve before her kidney was put at risk. If she were to have an infection in the interim, we would have to have the surgery after all.
More on that later, but let me back up for a bit first…
The kind of news that we seem to hear most often from doctors about Esmé is what I feel can be the hardest to digest–the vague “we aren’t really certain what is causing this or what it is.” It seems that Esmé is just unimaginably difficult to figure out. We have sorted out some mysteries with much time and effort, like her retching which was resolved by that last surgery or that she is, in fact, having seizures (although we still have trouble characterizing some neurological-like episodes). But there are other things that we struggle to understand about Esmé: phantom “infections,” bouts of pain, fevers that come and go, breath-holding spells, lung sounds which shift dramatically from terrible to perfect in a matter of hours.
What I find so terrifying about these unknowns is that I am afraid to miss something and, as a result, let it get out of control before we can help her. This is what happened when Esmé was 3 1/2 months old…her aspiration was missed until it almost claimed her life. Esmé’s team is always vigilant about her health, but there is a limit to the things we can see and predict and test for…and that reality makes it so that missing something again is one of biggest fears.
I should also say that, of course, the unknown is far better than some of the news a person can receive about their child. We have been so lucky that, with the exception of an early misdiagnosis Esmé’s prognosis has always left a lot of room for hope.
So, back to her kidneys–and the good news.
Last week, as those of you who follow our Facebook page know, we received some unexpected very good news: Esmé’s kidney reflux–which had been almost as bad as it gets–had not only improved, but it had resolved entirely on the bad side (the other side shows a very low grade of reflux).
This was shocking news to us–and to her doctor.
Now, we expected there was a chance it might improve somewhat–or that it had worsened to the point that there was no longer a choice to wait. One of my biggest concerns was that we would stay in some kind of weird gray zone where deciding the next step would be the medical version of flipping a coin.
I did not, in my wildest dreams, think that there was any chance whatsoever of her reflux resolving in 15 months. I’m not sure what the probability is on this happening–but while it is not impossible, it is very very highly unlikely. I have written before about Esmé’s relationship with probability...so perhaps I shouldn’t have been surprised, but usually her insistence at being unusual leads to bad news.
But not this time. This time we got good news.