Skip to comments.Joey 6 yo son follow up - kidneys
Posted on 01/23/2012 12:35:43 AM PST by schwingdoc
Hello everyone. I am so truly humbled and sincerely lifted by eveyone's responses. What a new world of connectivety we have. Real prayers and teams of warriors whom I've never met, have come from everywhere, based only on a few common grounds, besides logging in to the same (wonderful) website. (Thank you Freeper!!) 1. We love and fear God. 2. We love and hold our children so close to our hearts. 3. We look to grow our faith based on God's constant interactions in our lives. 4. Our hope in humanity is elevated by the notable responses of sincere prayers and thoughts from strangers whom immediately become family with a single thread reply.
Joey was hospitalized from Wed to Sunday at Childrens for kidney biospsy and start therapy. (Seattle) For you docs: he has an IgA mediaited proliferative mesangial glomerulonephritis resulting in nephrotic syndrome. The good news however, according to the wonderful nephrologist, Dr Okamuro, (I love you)' "the biospy looked much better than I ever expected."
There is a spectrum of findings on histology (biopsy of kidney tissue): 1(good) to - 4(bad) 1. Mild proliferative mesangial inflammation 2. Moderate to severe proliferative measangial inflammation 3. Severe inflammation with some crescent formation (scarring) 4. Significant diffuse, widespread cresents and diffuse scarring.
Joey's biospy went well clincally. Tolerated the anaeasthesia well, no complications, The staff and nurses at COH in Seattle are God's personal angels. The next day (we had terrible a terible week of city stopping snow) the atttending Dr Okamuro came in on his own time to read the biopsy himself. As he said: "I am pleasantly surprised to see no crescent cells". Based on the amount of nephrotic syndrome (6800mg protein / 24 hours),low albumin (2.0), protein / Cr ratio of > 11 - and significant clincal edema (swelling) he expected to see a worse biospy.
As it turned out the biopsy had lots of inflammation as expected, but less chronic scarring (crescents) than expected. (essentially a stage 2 of 4, whereas his urine tests suggested worse). This bodes well for long term healing and recovery. This was a miracle in my opinion. 6 -7 weeks of nephrotic syndrome and a biopsy showing no crescents tells me divine intervention for healing.
So he healed quickly from the biopsy and they started high dose pulse therapy iv steroids and and immunosuppressant called mycophenolate mofetil (MMF). We are now home. The doc believes that this is curable based on the favorable biopsy and assuming good response and tolerance to the meds, which can run 1 -2 years.
All things equal, I am so thrilled compared where I was the day I posted the original thread. I saw no hope, and you all instilled hope, prayed and manifested hope via the "unexpected" favorable biopsy. How can I ever thank you? How do we not stay on our knees worshipping and praying to our God 24/7? In so many ways we are not worthy.
Now we wait and see how he does with meds and hopefully watch as the urine tests and kidney function improves. We have to navigate the lanmines of sideeffects from the immuinosuppressants, but now hope springs eternal.
Its has been agonizing to see my little man who was cut, and athletic and strong and focused, be reduced to a sick patient with protein wasting, muscle loss, shortness of breath, and emotional changes from the steroids. Still the door to complete healing has been opened, and I very much would like to help escort him through with the prayers from my friends and my new found family here, and the healing power of Christ our Lord.
Here is my favorite little guy, giving you all back a little thank you:
Hey Joey..know this..your father protects you. Give him a big smile and a great big hug.
Fantastic news! Prayers for his continued improvement, easy time with his medications, and a complete healing from heaven.
He is a very handsome boy with a beautiful countenance. How many grandmas does Joey have? What I mean is, he is so precious he looks like every granny in town would want to claim him and then proceed to smother him with love and kisses wherever he goes, lol. :)
So glad to hear it for all of you. Get better Joey.
I am sure you will be reading this thread at some point.
So glad to see ya smiling. You have been in my thoughts and prayers since your folks filled us in.
Keep smiling, my young FReeper FRiend.
Thank you God. What a handsome young man.
He has a plan!
What a lovely boy! Thanks for the ping, Ezekiel ... I’m so pleased to know of young Joel’s progress.
I’m a new addition to Joey’s list. Prayers up!
GLORY AND PRAISE BE TO GOD IN CHRIST JESUS!!!
What a wonderful blessing, THANK YOU for your update. Joey’s been in our prayers since you posted, and what a joyous relief to see his beautiful, sweet smile!
Thank you, great, gracious, wonderful, LORD!
Glad to hear all is well.
How wonderful to see him smiling. Thanks for the update. Please continue to keep us posted on the progress.
Prayers up, Joey! Great news!
Thank you for the update. I was anxious to hear how Joey was doing. I know it has to be tough for the little guy to even be in the hospital and have all thoses tests run. He looks great. Keep the faith. Keep posting.
Thanks for sharing a picture. What a beautiful child.
Praying that God keeps things moving in the right direction. :)
Such trying times, Prayers for your Joey.
Please tell Joey we continue to pray for him and his family.
Exodus 15:26 ~ For I am the Lord that healeth thee ...
Rejoicing with you!!!
God Bless you all. What a beautiful little boy! Continued prayers for you all!
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