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Patrick was born on January 29, 2005, eight weeks early. His kidneys were severely damaged in utero by a condition called PUVs, where a small flap of skin fails to clear, causing urine to back up into the kidneys. He had a pretty rough go of it for the first two years, spending as much time in the hospital as out, and losing the first of his native kidneys in the process. He fared only a little better for the next few years, as he outgrew the remaining kidney and slid into failure. Finally making the transplant list, a miracle happened and he recieved a transplant within days of making the list, just as his kidney shut down.
Fate again reared its ugly head. Pat was allergic to the first anti-rejection medication (the one normally used for children), and the kidney was almost destroyed within a few days of transplant. He underwent what was then a new procedure, filtering the antibodies from his blood, and replacing them using gamma globulin, plus a chemo drug follow-up in case the globulin came with any nasties.
He has had to repeat these treatments many times since, a veru unpleasant process that takes a number of weeks, and requires him to be implanted with a central line to allow for the filtration of his blood.
In February of this year (2014), he picked up an 'ordinary' bug. Parent of an immunosupressed child can tell you that NO illness is 'just ordinary'. Within days, he was in intensive care, with several viruses, a bacterial infection, pnuemonia, a large bleeding ulcer, and severe kidney damage. He suffered several seizures, became unresponsive, and had to be intubated to allow him to breathe. After three weeks in ICU and Intermediate Care, he was finally out of the woods for the moment.
He required inpatient physical therapy at a Peds Rehab hospital, and returned home to continuing therapy.
Within a week, we were back in Hershey Chldren's Hospital with another bug.
Late in April, he bagan showing signs of acute rejection; confirmed by biopsy.
He is once again undergoing the unpleasant and painful series of treatments required to stave off the rejection of the transplanted organ for another little while. Naturally, this series will be followed up with yet another surgical biopsy, and possible another round of treatment.
We are hoping to get him home to receive his First Communion with his class, although he will still have the port in his neck and chest, and we may have to 'turn and burn' right back to finish the procedure.
He is hoping to attend Camp Kydnie during the week before July 4th, where he can have fun with other children with kidney disease and transplants; we are hoping that he is well enough, and that the central line is removed by then so he can swim and play with the other kids.
Unfortunately, every day away from home (heading on 60 this year alone) costs a tremendous amount of money. Even fast food for two meals a day, a few beverages, and daily expenses can eat $70-100 a day, plus the gas to get from the Scranton area to Hershey a few times a week, plus copays and deductibles (my FSA is long gone!) have once again depleted everything we had. I can't even offer him a small get-together with the family after he receives his First Communion, which saddens me.
I really hate to have to ask for help; it makes me feel like I'm not doing my job, but I am swallowing my pride for my son's sake, and asking that if you can spare just a few dollars, we will be eternally grateful.
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