Update on Jose as written by his foster mother

Jose and I spent the first two weeks of April in the hospital in nyc. We flew Atlanta to La Guardia on Easter (Alan Jackson's album of hymns on the way with Old Rugged Cross was about the best Easter service I've ever heard). We visited the penguins in Central Park and the dinosaurs in the Natural History Museum on Monday and drank a lot of fluids and played a lot of Go Fish in the hotel that night. Jose got his two sclero surgeries on the 6th and 9th, where Dr. Berenstein'

s team injected the same drugs as last time into his neck to start the sclerosing process and create a plane for excision for Dr. Waner. The day after the 2nd injections, though, his labs looked funny...probably an error, they thought. But they rechecked, and several of the labs that indicate kidney function were too high. They rechecked once or twice a day for several days, and the labs kept getting worse. This, along with edematous arms, blood red urine, high blood pressure, and no appetite, showed that something had led him into acute renal failure and made the excision impossible. His labs and physicals and renal ultrasound from before admission had been normal, so all the docs seemed to agree that he'd finally had enough of the drugs, or maybe they did something else different with the slow-flow clotting factor; nobody was positive, they had never seen this before, but the head doc on the pediatric intensive care unit and the pediatric nephrologist said they would not approve any kind of surgery for Jose for at least several weeks or months, and then only after a good renal workup.

Thanks to God his kidneys did turn around that 2nd week, and everything went back to normal. After needing blood drawn every 12 or 24 hours, his veins went into hiding and they'd try 2 or 3 times to get blood. Sometimes his old IV line would work, but usually that came out so slow it would clot before getting to the lab. A couple times they had to do arterial sticks. Once I was holding Jose's free hand and trying to get him to look at me instead of staring at the needle; but, still tensed up and staring at the needle digging in his arm, he held up his free arm and hand toward me as if to say: Please be quiet; I simply have to watch; it's OK. He'd cry but always be extremely still for the nurses. Actually, he started suggesting veins they might want to try the next time and reminding them what hadn't worked the last attempt. The first time his urine went back to yellow I held up the plastic container and said, Look, it's beautiful! He laughed and laughed that I called his urine beautiful.

We left the unit Saturday morning, the 17th, after one last check of his blood pressure and creatinine and urea nitrogen levels. We walked out by the nurses station; they were happy and telling Jose bye and clapping, and of course Jose was very happy to be going -- While walking around the picu circle earlier that week we had pretended to think of ways to get out those doors without anyone noticing! It was a little sad, though, because of another patient who had been up there the whole time, unconscious, and whose mom was looking up funeral homes that morning instead of expecting to get to walk out with her boy. But she waved goodbye and told Jose to take care.

So we've been back home in Chattanooga and Jose is again a healthy happy active functioning little boy with his kidneys and everything working well again, and for that we are so thankful. The sclero they injected in his neck may actually help minimize the overgrown veins there a little bit, which would be good. Not wanting to risk more serious kidney issues, though, he will probably not get an excision any time soon unless all his docs and the nephrologist agree it wouldn't be overly stressful on his kidneys. But he will definitely never get any more sclero!

As of now it looks like Jose will head home as planned on June 2nd with April. He has two parents who will be very happy to see him, and 2 little brothers who, I am told, like to play Spider Man and chase and to go fishing in the river with Jose. He's also going to try to fit the fire engine in his suitcase this time, but we'll take out the batteries first so he won't set off any alarms at the airport!