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Off to the river again, yesterday, to go fishing. The family and I packed our vehicles and went to the beach. It's alot of work, as we have lots of gear, but it was so much fun!! Grandma, Grandpop and Uncle Mark ended up meeting us there, and Uncle Mark caught some fish he let the kids reel in.
Angelina caught a snapper all by herself. She casted out the line and caught the fish. She was so proud! I caught some snapper and a flounder myself! It was awesome! Of course, we threw our fish we caught back, flounder season was over last monday, so even if we wanted to, we couldn't keep him.
I look forward to going back and fishing again! It was so much fun!
We ended up in the ER at ST Peters Hospital on Labor day evening. Allie was very puffy, her belly was very distended and hard to the touch. She had a hard time getting up when she sat down and her breathing was labored. We called the doc and he wanted us there right away. Her belly was full of fluid. Up until this point she was urinating regularly, but that day, she didn't go that often. Paying careful attention to when she goes and what she does, I was concerned because she hadn't had a bowel movement in a couple days too.
They did labs, urinalysis and xrays. Her lungs were clear...no fluid (hooray), but her belly was full of fluid. So, they gave her lasix via her iv and she's been on it every since. The dr did increase her dosage as she only urinates 3 times within a 24 hr period. I'm very worried about my girl. In addition to the prednisone and lasix, she is now on a blood pressure med that is known to help protein the urine to go down. We had her appt today, and the protein levels in her blood are going up, which is good, but the levels in her urine went up also. The er labs showed her levels to be at 4 (up from 2 a week prior) and today, they were at 4.5, definitely a step in the wrong direction. We will be going for bloodwork on Monday and talking via phone on Tuesday. It looks like the next step is a kidney biopsy. The dr said that she's either steroid resistant (meaning she does not respond to this type of treatment, and those children are hard to treat) or she has what's called Focal Segmental Glomerulosclerosis. Here is info about that:
http://www.nephcure.org/Info_aboutfsgs.html
So, that's where we are right now. I'd so appreciate any and all prayers you have to offer. Here are some pics of my girl!!
We are embarking on a long journey. It began mid-July, when the girls had their well visit. They all checked out great, the normal make sure they exercise and watch what they eat. The next day we make a trip for their annual blood work that checks cholesterol. No biggie.
We get a call a few days later from the ped. telling us that Allie's cholesterol is 446, that we need to take her back to the lab and have her fast. The results were almost as stunning as the first. Her cholesterol was still in the 400's, and they found blood and protein in her urine. Immediately, the ped wanted us to get in with a nephrologist, she was really worried about her kidneys.
We get an appt for the following week...we go to Freehold (Centra State Medical Center)...about a half an hour drive with no traffic. Her dr is the chief pediatric nephrologist for St Peters University Hospital, so he's the best in NJ. She was diagnosed with Nephrotic Syndrome. Every day here eyes were really puffy when waking, and we thought she had allergies. Turns out that is a symptom of this disease.
In a nutshell, the filter in her kidneys are not working properly, causing blood and protein to spill into her urine, instead of staying in the body where they belong. This is causing water to be retained in tissues, her liver to release some kind of enzymes that cause the cholesterol to go up. At our first visit, her levels of protein were at 3.
The treatment consists of 3 months of prednisone...6 weeks to see if it works, the next 6 weeks slowly coming off of it. At our 2nd visit, 2 weeks later, her protein levels were down to 2. A step in the right direction, just not as fast as the dr wanted. 60% of kids with this disease respond to treatment within the first 2 weeks, 30% by 4 weeks, 5% by 6 weeks.
