Two weeks ago Izzy had a follow up visit at the hospital with rhuematology. Things have been going pretty well for Izzy and her HSP issues. We agreed that she looked good and that we would continue to follow up with the urine checks to be sure that her kidneys weren't affected for TWO YEARS. Yes, two years.
Before we left the hospital we dropped of a urine sample and since we hadn't heard anything we thought we were in the clear. Well on my way into court two days ago for a CASA case hearing- I get a message from the hospital wondering why I hadn't taken Izzy in yet for the repeat urine test to see if there was still BLOOD in her urine.
Apparently they had faxed the results and orders over to our family doctor and they never got them so guess who didn't know for two weeks that her little girl had blood in her urine? Guess who was upset? (To say the least.) Izzy needed a first morning urine. We are working on potty training right now and figured that even if her nighttime pull up was wet on Tuesday morning we would be able to get a urine sample over to the doctors office.
Izzy woke up at about 8am and I got her on the potty. I couldn't get the cup in the right spot and remembered that I had a "hat" in the closet to catch urine. I grabbed it and rinsed it out really fast hoping I could get it clean of fuzz from the closet and it would be sanitary enough and fast enough to get onto the toilet. What I saw collect in the "hat" was TEA colored. Not yellow urine colored. I knew then that we had a big problem.
I still had to get the kids ready for school and out the door and maintain composure knowing that I could SEE blood in the urine. That is how much was now in there. I also saw some fuzz from the hat and realized that I hadn't cleaned it out that well and that I probably messed up the first morning urine that they desperately needed. I also knew that I only had an hour to get it to the lab and that with the bus coming at 8:50 and the lab opening at 9am, I had better be there when they open.
I showed the tech and she said... "well maybe she is dehydrated" as not to alarm me. I appreciated that vote of confidence but knew in my heart what I was seeing. Once we got home I pulled out my test strips and tested her next pee and saw both blood and protein on the test strips. Double whammy. I had gotten the heads up that the results would be back by 1:30. I waited and nearly made myself crazy with worry.
At 1:30 I rang the doctors office and they said that someone would call me back. It was confirmed in that moment that they were having someone call me back that it wasn't good news. The doctor himself called and got down to business letting me know there were LARGE amounts of blood in her urine. I asked him what that meant. I explained that the last test at the hospital two weeks ago was 2+ and he said - it just says LARGE quantities- it doesn't say how much and its not normal and it doesn't matter how much- she needs to see a specialist asap. There was also protein in her urine which is a sign that her kidneys are definitely being affected and likely because of her HSP. Some children with HSP do go into renal failure. While the amount isn't huge its still concerning and we are wondering if Izzy is headed down that path or if this will resolve with medication or what?
I called down to the hospital an hour later and they hadn't gotten the referral but got us in the next appointment for "B" grade (need to be seen within five days) which is the level she was rated at. They also sent all the docs an email with her records to see if they could see her Wednesday or Thursday. Sure enough this morning I got a call that another doctor would be seeing her tomorrow morning.
While Izzy hasn't been sickly she has had a low grade fever. She has been slow to gain any weight since August when she got the HSP and only has gained a little less than a lb. She doesn't eat well, is pale, and sleepier than most children her age. All of these signs and things are flooding back to me like a whirlwind and I am hoping that this resolves or is able to be treated without too much trauma to Izzy. She has already been through so much. Too much. I will update more on the FB group or on here once we are done at the nephrologists tomorrow. Please keep her in your prayers! Thank you.