Because she has done so well, I had gotten a little complacent. In the back of my head, I knew things could change... but with such an amazing track record, it was hard to believe that it really would. It is easy to say the words, "My daughter has a serious liver disease, and she will probably need a transplant one day." But when you hare talking about this beautiful, normal looking girl (that seems just as healthy as anyone else on the outside). I found it hard for even me to believe those words as I said them...after all, she has beat the odds so many times. Why wouldn't it always be just like it is now?
Over the years she has had an extremely large spleen. It scares me when I think about how dangerous this can be. When she was very little I used to explain to her that it was like a balloon in her tummy. She needed to be very careful to not "pop" the balloon. But, despite saying this and worrying about it ... it never has popped. However, the large spleen has trapped some of her platelets, making her blood clotting time a little slower, but it has never caused a serious threat.
Makelle (center) about age 3. Her tummy was enlarged from the liver disease.
When Makelle was about 3 she was diagnosed with damage to her left kidney. There were some structural malformations that caused her urine to reflux back into the kidney causing recurrent urinary tract infections. It took 2 surgeries and shunting to stop the reflux. After the first urinary tract surgery, she had a hard time. She began hemorrhaging and needed a blood transfusion. I was terrified. She looked so pale and lifeless, but thankfully the transfusion worked. She had valiantly pulled out of yet another terrifying situation.
She has battled recurring urinary tract infections her whole life. We have the kidney damage under control, but she currently sees a nephrologist, Dr. Mauch, to control high blood pressure related to her kidney damage. Thankfully she is being carefully watched for this challenge as well.
Makelle also has had several episodes of cholangitis over her lifetime. These have required hospitalizations and IV antibiotics. She could get so sick, but she always came right out of the infection with very little consequence. 10 days of antibiotics and a bump in liver function tests was all we would see. She had never gotten jaundice again after the original kasai procedure... even with the cholangitis episodes.
A few years ago, during a routine scope to check for varices, we discovered she had a couple of small ones starting to form. Her wonderful GI Doc, Dr. Book (who has cared for her throughout her entire life) banded them . This redirects the blood flow from the veins that are enlarging. It was a rough recovery, and made Makelle feel really crummy, vomiting lots of blood... but it worked! Dr. Linda Book has done an amazing job controlling her portal hypertension and bile flow! We also owe a huge debt of gratitude to Dr. Rebecca Meyer, her surgeon, who did a miraculously amazing job on the Kasai so long ago. Every Dr. we have seen over the years stand in awe at the miracle of having such a successful Kasai. It is definitely a rarity.
So time has rolled on... very quickly for that matter! Despite these bumps and scares, the wonderful precious memories of my sweet Makelle and her brother Kaden and sister Brenna have far out weighed the bad times. There are no words to express how grateful I am to my Heavenly Father for blessing us so much. To be given this amazing gift to raise Makelle so normally, despite a very devastating life threatening illness is nothing less than a miracle. How can I ever express enough gratitude?
Groves kids Feb 2001
Groves kids 2004
Groves kids spring 2010
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