We recently returned from our twice-a-year trip to Lucille Packard Children's Hospital at Stanford. As many of you know, Bella's health the past six months has been laden with sickness, with the coup de gras being a kidney infection.
So, I felt a bit more anxiety than normal this trip. It is the first time we have seen Bella's team since the kidney infection, and I could not help but wonder what damage may have been done.
It turns out that indeed, there has been damage, but not because of the infection necessarily! Let me explain a couple of things about pediatric kidney transplantation.
1. Bella's toxic kidneys were removed and replaced with one adult kidney.
2. This means, a majority of Bella's organs, intestines, etc. were literally re-arranged in order to accommodate an adult kidney (she was 14 mos. when she had a transplant) which is now located in the front of her torso, versus the back where we all carry our kidneys.
3. Kidneys do not regenerate. Once they lose function, it is permanent. The shock of transplantation coupled with a child's heart's inability to pump the proper flow of blood to and from an adult kidney caused permanent damage from the start.
4. Bella's anti-rejection drugs are a Catch 22. They will be a part of her daily regimen for the rest of her life in order to suppress her body's natural desire to reject a foreign kidney. At the same time, a side effect of these very rejection meds is that they are toxic to kidneys, thus very slowly killing off the kidney. This is why her medication levels are monitored so closely and why we have so many blood draws.
5. Having an adult kidney as a child, trying to pump enough blood between a child-sized heart and an adult kidney, having your inner parts not be exactly where they are meant to be and supposed to be means that Bella tires faster, needs more restorative time, needs more nurture, and just needs more period.
Upon review of Bella's kidney, it has come to our attention that Bella's kidney is losing function, experiencing more toxicity from the meds, at a faster rate than we would like. So, we have adjusted Bella's meds as the first means of combating this and hopefully slowing it down. If this does not work, well, let's just not go there yet, shall we?
As you can imagine, this news was very difficult to digest. And, I found myself grieving a bit. Let me explain.
When Martin and I got married, part of our vows were to honor the passions and callings in one another. We planned on spending time living in Martin's home country of the Czech Republic. We planned on me working and traveling on behalf of the vulnerable. And of course, having a family was included in all of that as well.
Then, Bella was born. Our world was turned upside down. And all of the sudden, those passions and callings for me (and Martin, too) were put on hold - indefinitely.
Would I change anything? Absolutely not. Do I sometimes grieve that I am not able to live out right now some of the passions God has placed on my heart? Absolutely. And sometimes...
sometimes I grieve more than others.
It also makes me grieve for Bella. She is starting to understand that she is "different". She is starting to work out all of the horrific trauma that she experienced as a baby. We, as a family, have started to receive insensitive comments from people. And that. Well, that just brings out the mother lion in me.
At the same time, and ever more strongly, I feel a sense of resolve. I feel more passionate than ever to ensure that my daughters feel that their parents think they hung the moon. I feel more convicted about encouraging my daughters in what they are gifted in, instilling them with a sense of purpose. I feel more passionate about ensuring that my daughters become beautiful, compassionate, Godly world-changers.
I am woman.
Hear me roar.