On Sunday, Mar 2, a friend at church expressed concern over Ada and how puffy she was, asking if she had been stung or was allergic to a medication.
Aha, I thought. So I started giving her Benedryl, but after 24 hrs it still wasn't making any difference. I spent some time online looking up puffy (a very vague description to look up.) What I found was a reference to edema, when the body retains water. A specific type of edema is "pitting edema" and is evident when you press your thumb against the persons skin for a couple of seconds and a divit remains. That was easily done with Ada and explained what was happening to Ada's legs, also her arms we found. So I called and made an appointment with the Dr for Friday.
While we were waiting I kept searching on the internet for causes of edema. What I was finding was not encouraging, mostly information about major organ failure. I mentioned this to my sis-in-law, who has been in the medical field, and she suggested that I call the Dr back and speak to a nurse instead of the receptionist to findout if the Dr was comfortable in waiting till friday. I wasn't certain if this was necessary as it appeared to be going on so long. I kept searching on the internet and found information about edema on the Mayo Clinic web site. It described the symptoms and complications and possible causes. It also gave a list of when to contact the Dr. Ada did not have difficulty breathing, but it also mentioned abdominal swelling. I checked Ada over and sure enough, her belly was swollen up like a balloon, the belly button closing up. So I called the Dr and spoke to the nurse, who set up an appointment for the next day (wednesday).
After a LONG morning we got in to the Dr and they wanted a urine sample, which took forever because as part of the disease she was not processing liquids, and there were so many other things to be interested in than going potty. But we finally got a sample and then she was all over finding out how they did the tests (dip stick). They also took her blood pressure again, it was high for her age, so she wanted to know just how they took the blood pressure. Then a medical student came in to do the exam all over again while the Family Dr spent some time on the phone calling specialists and looking things up on the internet.
Finally he came in and told me that he wasn't certain what was going on but that her kidneys were not functioning right and he suspected she had something called Nephrotic Syndrome (or minimal change syndrome) and needed to be seen by a pediatric nephrologist (kidney dr). He told us that we could wait and get an appointment in the next couple of days, but he was worried about wasting valuable time if her kidneys were shutting down and suggested we make arrangements for the other kids and get her straight to the local Regional Pediatric Hospital's Emergency Room. So we went straight from the Dr office to pick Dad up from work, got home, had a friend help give her a priesthood blessing, told each kid to pack pj's and a change of clothes in their pillow and get in the van. We dropped off a few responsibilities to others on our way out the door, not knowing if we were looking at 24 hrs or several weeks away from home, and headed out on the road for the pediatric hospital.
On the way we encouraged the kids to watch movies (on the little TV things we had picked up at christmas while stranded by snowed out roads) and we made calls to get the older kids excused from lessons they were suppose to be at that night, called family to let them know kind of what was up, and ask for prayers.
Grandma & Grandpa met us at the hospital to take the other kids to Dad's sister's house to stay the night. By this time there was so much pressure in her abdoman that she had vomited in the van, and again in the waiting room.
We got signed in, and managed to provide another urine specimin. Now Ada is feeling very bloated and stiff and is not feeling well or acting like herself. We also learn at this time that she is carrying somewhere between 5 and 10 lbs of water with the bloating. At 5pm they have finished all the initial check in and we are told to take a seat and they will call us back as soon as a room is available.
