Friday, April 20, 2012

Doing the Happy Kidney Dance!


The news is very good! Jie Jie's kidneys look extremely improved over the last ultrasound! The nephrologist was super happy and explained, that based on the previous ultrasound and blood work, that it did suggest that Jie Jie no longer had any reserve left in her kidney function. It was clear how relieved and happy the nephrologist was; she was practically dancing in her chair and repeating how happy she was over and over again.

On today's ultrasound, both kidneys looked plump, which they didn't before, there is no more hydronephrosis, though there is a tiny bit of fluid in the left one, though not enough to call it hydronephrosis, they both measured a healthy size, the right kidney looks to have sustained more damage than the left one, but it's the left one that has the bit of fluid still in there. So, Jie Jie has definitely sustained damage in her kidneys, but she still has reserve, though how much cannot be measured.

We have a new directive: Keep the kidneys healthy by keeping the bladder healthy! This goes above all other things because this one is life or death. All of Jie Jie's other special needs take second seat to this.

Jie Jie will have blood work done in June to test kidney-related values again. These three months are to give the kidneys their best chance to do their job unimpeded and with the help of the treatment Jie Jie is on. Every six months, Jie Jie will have a renal ultrasound. She will also undergo a nuclear test that looks at the scarring in the kidneys and then the invasive diagnostics, then, hopefully, meet with the surgeon for the non-kidney-related surgery and the diagnostics that go with that.

I thank you all for your prayers and good thoughts and wishes! As I've spread the good news, so many friends have told me that they fasted and/or prayed hard for Jie Jie. After seeing the nephrologist's response to today's ultrasound, I can see that we got better results than she had expected and I know this was through divine intervention. I feel confident in the care Jie Jie is receiving from this specialist and she spent over an hour with us today giving me clear answers to my questions.

I now have some research to do. One thing that is a catch-22 is that growing children need to eat protein, but filtering protein wears more on the kidneys. I need to find out which protein sources are the easiest for the kidneys to metabolize. Luckily, I don't use much salt in my cooking, but we really need to try hard to limit our eating out since restaurant food is high in sodium. I'm good at watching Jie Jie's nutrition, but now I need to take it to a higher level. Antioxidents are extra critical to her well-being as are Omega-3 fatty acids.

There are so many children in the world far, far worse off than Jie Jie. I know we remember the poor, the sick and the needy in our prayers, but please add a bit extra tonight for the children and their parents. As we came into the clinic today, a mother came out following her little girl, who looked about 3 or 4 years old. The child was on a gurney being taken by amblulance two blocks to the hospital. The mother's eyes were wet, swollen and red from crying and full of fear. The child was sitting up with a bowl, to catch her vomit, on her lap, awake, but silent, as very sick kids are. I had a second as I passed, to embrace this mom's shoulders and tell her I'd pray for her family. Often, intruding at such a moment, even with such good intent, is not the right course of action, but I was moved before conscious thought. When the mother thanked me, I knew it had been the right thing to do.

Right now, several blogs I'm following are written by families who are in serious medical situations with their children, all adopted children, chosen knowing their child had special needs, but, as we all know, not knowing to the full extent. Often, the needs are less, sometimes the needs are exactly as expected, at other times, the needs are greater, even far greater, than we ever thought or expected.

On my list is, of course, my own daughter, little Ivy who is recovering from major heart surgery to correct transposition of the great arteries, Theresa who lives in need of a new heart, but is waiting for her badly damaged lungs to heal enough to be eligible for a transplant, Celia who has a terminal mitochondrial disease and something else as yet unidentified that is steeling the life out of this beautiful girl, who is also a twin. Also on my list is Tripp's mom; Tripp died of EB a couple months ago, and Anton's family as they've just returned from Russia and a hospital stay here in the U.S., as they stabilize his EB.

Tonight I am very grateful for a loving God and Savior, that my daughter has reserve left in her kidneys, that they responded to the recent and on-going treatment and that we have a solid care plan in place that I hope and pray will protect them from further damage. I am more grateful than words can express that she is my daughter, that her caregivers in her SWI never gave up in their efforts to find her a family, that I had the courage to adopt her and that I'm finding the strength to fight battles on her behalf, and that I'm finding the right specialists to help her. I'm thankful for the love and support of family and friends and even strangers we meet. My TuTu always told me that I go where angels fear to tread. If I didn't, I would not have my daughter, and I can't imagine my life without her.

2 comments:

John G. said...

Blessings from CT. We will continue to pray for your precious and beautiful little girl. You are an inspiration. I know how hard it is. My daughter had many problems when arriving along with three ear surgeries and her adnoides taken out and I was besides myself with fear and worry. I can't even imagine what you are going through or how you handle it so well.

Stay strong we are all praying for you and your daughter, along with your future daughter.

Caroline

Princess D said...

Wonderful post.
So glad the results came back so positive. Hoping you find the info you need for Jie Jie's diet to help her grow healthy, but protect her organs.
That we'll never know the extent of the special need of a child we are bringing into our family. . .whether adopted or biological.
Praying for all families and their special needs.