My girl........

She is starting to look so grown up. This picture was taken before her illness and before the puffiness of taking steroids kicked in.

Sorry I know I said I would update when I had word on Jordan’s condition. But this weekend I was emotional and physically exhausted.

During her entire illness Jordan kept complaining about her stomach and how it hurt. But we all concentrated on her lungs and breathing, since that seemed the most critical at the time.

Come Monday morning she seemed to be doing much better in the breathing department and got discharged from the hospital. But her demeanor had changed. She was running a low-grade fever and just not her chipper self. Those who visited her over the weekend could say she didn’t seem sick until right before she needed a breathing treatment. Monday, Tuesday and Wednesday she looked really pale and tired. She slept a lot. Which is normal when your ill, but things just didn’t seem right. Call it a mother’s instinct.

I called her primary care provider to have her seen. With the low grade fever and her stomach was really painful. At first the Dr. thought it was the steroids that she was on for the lung issue. After consulting with her asthma and allergist they both decided to take her off of it. Then the Dr. decided to get a CT of her abdomen. They got her an appointment for first thing the next morning.

I have to say I was really scared that night and the next morning. I was up at 5:00am cause I couldn’t sleep. I just cried and cried needing to get rid of the anxiety before Jordan woke up. I needed to be brave for her. I must say I have the best husband in the world. He held me and comforted me during my many breakdowns. Along with Michelle, Stephani and Anita who got several phone calls from me crying. Thanks for being great friends when I needed it the most.

What had my anxiety on over drive was Jordan has been complaining of a sore stomach over the last couple of years. She has a sensitive stomach to certain foods. We have narrowed it down to some, but there are still others that we cannot figure out. Then to add fuel to the fire my mom had a type of lymphoma that started out in the lymph nodes in her abdomen. Plus the lack of sleep since Jordan had been ill didn’t help either.

The CT was ordered with contrast. The night before she had to drink one 16 oz bottle of contrast. Contrast is this milk like fluid that tastes of chalkiness with a mild hint of a fermented fruit. I know sounds yummy. The bottle the night before is so that it gets into her large intestines. Then an hour before the procedure she needed to drink one more bottle to get it into her small intestines. It helps things show up better during the scan.

The scan it self only took about 3 mins altogether. It was starting the IV before hand that took a while. She could not eat or drink 4 hours before the procedure. So we could not pump her veins up with fluid. Of course they had a hard time finding a vein. They stuck one arm and moved the needle around and couldn’t find anything. Then they stuck the other arm and moved the needle around and finally got it. I was so proud of Jordan she laid perfectly still and kept saying “It hurts it hurts” But she didn’t shed a tear. She was so brave through out the whole process.

We headed to get some breakfast and run a couple of errands to kill time before out next Dr. appt. After breakfast and a quick trip into Costco Jordan got really tried and wanted to stay in the car while David finished up his errands. While at Fred Meyers Jordan and I both fell asleep in the car. David got what he needed in Fred’s and got his hair cut. Then we headed to the asthma Dr’s. They did a breathing test, which still looked good. Said to continue what we had been doing. She then checked to see that there where still no results from the CT. We left with a promise she would watch for the results.

Jordan did however fall asleep on the exam table, then again in the car on the way home. Normally when she falls asleep in the car she will wake up and stay awake after we get home. No she went straight to her bed and didn’t even crawl up to the pillow. She lay at the end of her bed and slept for three hours. I even had to take off her shoes. The whole morning had exhausted her.

Every time the phone rang I would jump trying to think the best but sometimes your brain takes over. Finally at 5pm I called the Dr and left a massage to call me if there where results. She finally called me back at 6:00pm. She said that Jordan had some lymph node in her abdomen that where inflamed. Of course hearing this my heart started to race. I was waiting for the cancer bomb to drop. She said with all the problems Jordan had she thought it was something called Adenovirus. I asked her a couple of times do you think it is cancer. She said she could not diagnose her because she is not a PCP. But she was certain it was not cancer. Her blood work would have shown some problems too. (big sigh relief)

She did say they found something else. Jordan might have what is called Polycystic Kidney Disease. This is a disease where cysts upon cysts grow on your kidneys. It is a hereditary disease. Since I have it there is a possibility that Jordan might too. She has a small cluster of cysts on her right kidney the biggest one being 7mm. It was a little disappointing to here that she might have it. Here PCP won’t officially diagnose it until she either starts having symptoms or when after she turns 15 we will do an ultrasound of her kidneys to see if anymore have grown.

With PKD most people aren’t diagnosed until they are well into adulthood. I was diagnosed at 30 and that was young. It was also a fluke diagnoses. I went in for an ultrasound of something else and came out with PKD. My kidneys are doing ok. They are rather huge, but that is normal for my diagnoses. The average kidney is about 10cm. My left kidney is 20cm and my right is 17 cm. But I still have full function of both of them. After this last visit I now have some physical restrictions. No marathon running and no more soccer. I can still ride my bike, swim and run short distances. But I am getting off on a whole other blog.

At her last Dr’s appointment her blood pressure was 133/82. Which is on the high side for an adult. But the Dr wasn’t too worried about it because she had been sick and on a lot of meds. We are going back at the end of October for another blood draw, a urinalysis and a check up to recheck her blood pressure. One of the systems is a high BP. She also wants to have a baseline for kidney function. We will take if from there. I will keep you all updated at that time

Jordan is getting better. After three days in the hospital and missing a week of school she is back to a normal schedule. She has been putting in full days at school and going to gymnastics practice. She is coming home and doing daily homework and then catch up homework. Both Monday and Tuesday night she was doing homework until her 9:00 bedtime. She is very tired by the end of the day, but is a fighter. Both David and I are very proud of her.

Thank you to everyone that sent me emails and messages with your prayers and concerns. It was nice to know we had you out there praying.