I brought Theo to 2 of his 4 doctors appointments this week. I booked them early enough so that there would be time to run any tests needed before we left and gather his medical records from everyone.
We met with the pediatric urologist on Tuesday, who was her typical pessimistic self. She has a tendency to paint a very dire picture of Theo's physical health, as if his urinary tract is is a ticking time bomb and she is waiting for the explosion. She is most likely right, but it is fairly depressing for me to think about, and there is not much we can do but wait so I usually try not to dwell on it.
For those who are interested, he had severe bilateral hydronephrosis before he was born which led to the complete damage of his right kidney and half of his left kidney. It seems to have gotten a bit better since he was born, or at least his remaining bit of kidney hasn't declined in the past 3 years. Unfortunately, kidneys can't repair themselves once damaged, and about a year ago Theo's body completely reabsorbed his non-functioning right kidney. We thought that this was really creepy, but it was actually the best outcome, since doctors don't like to see completely functionless bits sitting around in your body for too terribly long. The weird part is that it happened in a three month period; it was there on one ultrasound, and then it was missing.
The second appointment this week was with the pediatric nephrologist. Up to this point Theo's remaining bit of kidney has been keeping up with all its necessary blood filtering duties. This time though, the bloodwork shows that he has a developed metabolic acidosis because his kidney isn't able to produce enough bicarbonate (HCO3-) to buffer the blood properly. It also showed that he is borderline anemic because the kidney is not producing enough erythropoietin, a hormone that triggers bone marrow to produce red blood cells. This news was a bit of a blow, since it shows the very first signs of kidney decline. Today I will start him on a blood buffering medication that he will need to take for the rest of his life.
I really enjoyed taking physiology classes in university, but since I was in zoology, I really only ever studied how invertebrate and lower vertebrate bodies functioned. In the past 3 1/2 years I have become more interested in human physiology, but though it is interesting, I really wish my own child was not the motivation to learn. The appointments this week have left me feeling pretty deflated and disheartened, but I always feel that the best way to deal with this is to focus on the present. If I allow myself to wonder about all of the future possibilites, I get very anxious. Do what is best for him today and let tomorrow alone until it comes. I am sure that many parents who have a child with chronic kidney disease don't get 3 1/2 years of stable kidney function to wrap their heads around the situation, so I suppose we are blessed in a way.
My thoughts and love go out to you and your family. I'm impressed with your focus on today and it's joys. I always liked the quote: '"Worry does not empty tomorrow of its sorrow; it empties today of its strength." by Corrie Ten Boom. But sometimes that is easier said than done.
If there is anyone who is qualified to give advice on worry and sorrow it's Corrie Ten Boom. I really appreciate the quote, thanks!
Post a Comment