Wednesday, September 24, 2008

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.

Saturday, September 13, 2008

Life can be messy..............

I know it has been a while since I have updated. I have tried several times to put in an update. This past Saturday I was working on a massive blog, hence the picture of the Canadian flag picture by itself. But life keeps getting in the way of the blog.
This is at the boarder crossing.

A thing I was going to blog about was my company’s annual golf tournament, up in Canada, that I won an MP3 player for hitting the longest drive for women. Which is cool since that was the second time in my life I had played a game of golf.

Dave lost a ball at just about every hole. lol It was not a good golf game for him that day. But we had a blast.

I was thing going to tell you all about our labor day weekend how we were invited to three BBQ’s in one day and how we made an appearance to all of them.

Then it was going to be about my good friend Kristen’s birthday party.



…….and then……..(movie buffs will get this one) I was going to tell you about the HUGE fire pit my husband built in our backyard. We had a wonderful evening of S’mores and friends.

The pit.

The two J's. Jay and Jordan being silly. I don't know how may Jay eat or burnt that night but he was having fun.

……and then………Jordan’s first day of middle school. She was so excited yet nervous to attend. She had a wonderful 1st day of school and seems to really be finding her groove. To top it all off her best friend Summer is in all her classes, but two. They are also locker buddies. I took them to get their toes done so that they could start off school on the right foot……get it right foot…..toes. lol I know at least I make myself laugh, well and Stephani too. Because I know she is laughing.

Here she is looking all grown up and nervous.

…….and then………Speaking of finding her groove at school Jordan has joined the gymnastics/dance team. At meets they do a tumbling routine and some group dances. She really seems to enjoy it.
This is the t-shirt she will wear for competition.

BUT…….there is always a but…….what stopped me from my huge massive blog was a trip to the ER with Jordan.

On Thursday she came down with your typical head cold. Nothing major or at least that is what I was hoping. Friday morning she woke me up at 4am requesting a nebulizer. A nebulizer is a way of getting asthma medication into the lungs quick. It last is a liquid that is put into a machine that dispenses a mist to breath deep into the lungs. I gave her one and started her on nebs every 6 hours for Friday. I keep her home for the day.

This is her getting a neb treatment at home.

I got a call from David at 3:30pm telling me she was getting worse. So I made the dreaded call to her asthma, Dr. Elkeym (El-ki-m). They put her on nebs every four-six hours along with a steroid pill and an antibiotic.

I started giving her nebs every five hours thru the night. We have a facemask that I can use and I set my alarm for every five hours. She usually sleeps thru them, which is nice. Saturday we started having to do them every four hours. Then as the day worn on she started to need them sooner and sooner. When it got to every two hours and she was gasping for breath I rushed her to the ER.

In the ER they gave her another breathing treatment and watcher her for a while. She would get the treatments and appear to be fine. She would be laughing and talking acting just fine. She was one monitor and her heart rate was really high, but that is normal for someone having so many breathing treatments. The meds make you shaking and can raise your heartbeat, nothing to worry about.

The ER Dr came in and said he had a new plan and was going to send her home. But before he did he wanted Jordan to do a peak flow. This is where you take a deep breath and do a quick hard breath into a little device. This is to measure the amount of O2 a person is moving in and out. On a normal healthy day she can blow a 300. The Dr. wanted her to do at least a 200 before they would let us go. She made it up to 180. Not good enough. So the nurse went to see what the Dr wanted us to do. That was when Jordan had another attack. So they gave her another neb treatment. It had only been an hour and a half since the last one. They waited and we tried the cycle again. Blow, 180, little while later another attacked. After the 3rd time they said they were going to admit her up to the peds floor for the night.

Talk about the longest night of my life. She continued needing treatments every 1 ½ to 2 hours. Her poor little heart was racing and it really scared her. She said she felt like her heart was going to jump out of her chest. I think we got three hours sleep that night.

Even though it was a long night we did try to make the best of it. This is Jordan glowing toe. It is a monitor to check her pulse-ox and heart rate. We had fun playing with the glowing toe in the dark.

Sunday she seemed a little better, but still not out of the woods. The Dr. came in and said he wanted to keep her another night. So we got settled into our stay at the hospital.

This was taken on Sunday during our many wheelchair trips around the floor. This was before the fever hit.

Jordan had a large room that if needed could take 3 patients. Since she was the only yes the only pediatric patient at the time there was no fear of her getting a roommate. So we took over the whole room. She got several visitors that day. Which we really appreciated having the company.

One of our visitors was the Zerbst family. This was a site and thank goodness we had a large room. If you had come by this is what you would have seen. David in Jordan’s bed and Erich in the parent bed next to him and they where watching the Seahawks game. Jay was over on the other parent bed in the room playing a video game. Our little Lily was on the floor playing. Stephani, Summer, Jordan and myself where sitting in the middle of the room playing Apples to Apples Jr. I think Jordan kicked up.

The Zerbst family left leaving Summer behind to stay with Jordan for a while. David left for his soccer game and since Summer was there to entertain Jordan I took a much needed nap. Thank you very much Summer and Stephani for that one thing. After an hour nap I felt a new women.

Then I got a call from David, which this was a surprise because I new he game shouldn’t have been over. He called to say he was going to the ER. Yes you read that correct the ER. He thought he might had broken his collarbone. UGH!!!! When it rains it pours.

I called some family in to sit with Jordan so that I could be with David in the ER. Thanks to Anita, Galen, Hilary and Justin. Also thanks to Steve who alos stayed with Jordan. Of course the ER was crazy busy. The allowed us to wait in Jordan’s room until it was David’s turn to be seen. It turned out to be just a rotator cuff tear. At the time we didn’t know if he would need surgery, but it seems to be healing nicely and he shouldn’t need surgery.

Monday Jordan woke up feeling terrible. Her breathing was doing much better but the virus she had was hitting her body hard. She was running a low grade fever of 99.6 enough to make her body hurt. She was a different girl from the day before. But since her breathing was good the Dr gave us the choice to stay in one more night or be discharged. We discussed it and since I had the equipment at home to care for her we decided to go home.

Tuesday was a tough day. She felt terrible and was very demanding. She kept saying sorry for keeping me so busy, but she didn’t know what she wanted because she felt so bad.

We had a follow-up visit with the asthma and allergist. Where they did a lung function test. Believe it or not she tested better then she had ever test. But that is what the steroids will do for you. It was a good sign. But she was still feeling awful, so the Dr got some blood drawn. I got a call with the results late last night. Everything looks good except for her potassium. It is on the high side. This can be caused by a number of factors, but they want to do another blood draw later today to make sure it is not continuing to rise. Please pray that it stays the same or has gone down.

I will update as soon as I know anything.