One of the scariest parts of having a child with kidney disease is fevers. They scare the crap out of me. With Lincoln, the first few fevers were really terrifying, but once I figured out that fevers are not so bad as long as he is drinking and playing, I wasn't so scared. But with Jett, fevers send me into hysterics. Although Jett's kidneys are functioning as well as they possibly could be right now, there really is no indication when they will take a turn for the worse. A fever will be our only indicator. So, with every fever, every raised temperature, I break into hysterics. Is this one the one? Are his kidneys still functioning? Will this be the last time I snuggle my baby?
I think Chris thinks I am being a bit extreme in my thinking and I know that I can overdo it at times, but really, what thoughts would run through your head? Any time, EVERY time that Jett runs a fever, we have to follow the same protocol. We have to have his urine and blood tested. Simple enough, right? We were given urine bags and alcohol wipes for a clean catch so we always have his urine ready when we get to the doctor's office. However, getting his blood drawn is another matter. Only certain labs will accept babies as patients and none of those labs are open outside of weekday hours. And our babies always get sick on weekends. Always. The only solution is to take Jett in to the emergency room.
Take this weekend. Friday night (around 7:00 p.m.), Jett is running a fever of 102.7. We remember the last awful night trip to the ER for a blood draw and decide to give him a good night's rest before calling it in. Chris and a friend give him a priesthood blessing, we pumped him full of milk and let him sleep for the night. At 11:30 a.m. on Saturday, his fever was still 102.8, so we call our pediatrician's office and the renal fellow on call at Children's Hospital. The nurse practitioner on call insists that we only need a urine sample and not a blood draw (even though I assured her we would) and sets up an appointment for us at 4:30 p.m.
After waiting with my toasty hot son for 5 hours, she checks him over and tests his urine sample that we collected just prior to coming in. All clean. She sends us over to the hospital for lab work. They closed at 3 p.m. so we have to take Jett to the ER anyway. I knew this would happen when she won't see us earlier. I was so fuming mad, that Chris agreed to take Jett in while I stayed at home with Lincoln.
Here it is, 2:00 a.m. and I am still waiting up for Chris to bring my baby home. He arrived right before 7 p.m. and was shuffled in right away. However, no one can ever seem to get an IV into him so they always have to call the IV team. Tonight it took 4 hours for them to come down. In the end, all was clear.
I am so frustrated with our health care system and its inefficiencies, but I am grateful that everything came back negative. For now, we are just trying to enjoy the extra cuddles that Jett has been giving us. It has been kind of a nice break from his usual busy self.
As far as his regular appointments go, we see our nephrologist in November. We are hoping to possibly get rid of or lower his iron dose. That is nasty stuff that smells bad and stains everything. But really, it could be worse, so we aren't complaining too much. And then we see our urologist for more intense testing (ultrasound, VCUG, etc) in December. That will be the trip we find out more about Jett's upcoming surgery. We are hoping to schedule it for mid-January so that my sister can come help with Lincoln. If it is surgery to correct his reflux, he will probably be in the hospital for 4 or 5 days. If it is just the second part of his teste descent, then it will be an outpatient procedure. We will know more in December which surgery it will be and whether or not our surgeon thinks we can combine them.
Other than this recent fever bout, Jett is generally a healthy and happy little guy. He loves standing up and cruising around in his walker. He loves Lincoln and being a part of everything that he does. We have been so blessed and so happy to have him in our family this past year.
