Monday, June 21, 2010

It's been a while....

Sorry it's been so long again. There have been a lot of people getting ahold of me on facebbok and through email stressing their concerns over Ryan. Well....she is doing great. Me on the other hand, not so much. I stayed home from work today VERY SICK. Fever of 101 and aching all over. Also, I have a sore throat. UGH!! I really hate feeling this way. I have no energy at all. :(
I thought I would post some pics of Ryan actually having a good time in Cumberland.

We took Ryan on June 8th to see Dr. Myer up at Children's. He is her ear, nose and throat specialist. He thinks that the reason her lymph nodes got so big is due to strep. He thinks the strep attacked her glands and lymph nodes. The only way to know for sure what made all of this happen is to biopsy the lump. NOT HAPPENING. Her lymph nodes are still somewhat enlarged but a lot better. She took a very strong antibiotic for 2 weeks and has been doing well.

This is a picture of Ryan at the hospital last Friday. She had her sleep study done and we should be able to get the results at the end of the week. We were expecting it to go really bad but it went great. We thought she would scream her head off while they hooked everything up to her but she didn't make a sound....except for chattering away of course. She slept through the night with no problems. It was so nice to see her being such a big girl. I will keep everyone posted with the results when we get them. This study will be the deciding factor on rather or not her tonsils and adenoids will be removed. I'm sort of hoping they just do it and get it over with. She snores and stops breathing in her sleep a lot. Hopefully we will get it all figured out. This girl is my hero. She has been through so much and I really do look up to her. She can handle it all. She will grow up to be a stronger person for everything she goes through.
I will post again when we get the results of the sleep study and let everyone know what is going on. Thanks again for all the support and worry for Ryan. It means more than you will ever know. :)

Tuesday, June 1, 2010

When it POURS!!!

This update probably wont be very long because I have suddenly hit a wall of anxiety over the recent events that have taken place so I'm just going to get too the point. We left this past Saturday to go to Lake Cumberland. It's 4 hours south of us in Albany, Ky. We got to the lake at about 1:30 pm and my mom was there waiting for us with the boat ready to go. We were so excited to get away for the weekend...and Ryan loves the boat and lake. Everything was normal...and fine....and well.....GREAT!!! UNTIL....we were on the boat hanging out and we were getting ready to go for a swim. My mom had been holding Ryan while the boat was moving, and then handed her to me when we stopped so she could get in the water...and that's when I saw IT.....the strangest and scariest thing I have ever seen in my life.

I saw that on Ryan's neck!! I immediately freaked out!!! I have never seen anything like this before. I told my mom we had to go and we got the boat back to the dock as quickly as possible. I kept looking for a bite mark somewhere on her body just praying that she had gotten bit by a bug and was allergic to it....hoping that just some benedryl and she'd be fine. That wasn't the case. Jay and I left (leaving Josh with my mom) and took Ryan to the Clinton County Hospital a few minutes away. As soon as we arrived, they got blood from Ryan's arm and took her straight back for a CT SCAN of the neck and chest. The chest was fine and clear of pneumonia, but the neck didn't look so great. It looked as if there was some form of fluid in her lymph nodes. The doctor in the ER thought this needed to be surgically drained RIGHT AWAY but he wanted Ryan to see an Ear, Nose and Throat specialist first. Well, they don't have one at that hospital. He called the closest hospital which was in Somerset (an hour away) and they didn't have an ENT doc there or on call. Next on the list, UK (University of Kentucky...yes like the college) Medical Center. This was 2 hours away and only about 1 1/2 hours from home. The doc tried to get a helicopter but they couldn't provide one because it had started raining pretty bad.....not safe enough to fly. So, ambulance it was. I got into the ambulance with Ryan, and Jay was going to follow in our car. The ride was 1 hour and 40 minutes, even with us going about 90 mph and going through every light and stop sign. Ryan slept most of the way there and seemed to be peacefull. She acted normal the whole time. It was like she didn't even know it was there. Jay was following the GPS directions which was terrible because it took him down nothing but back roads to get there. He never even got on the highway. It should have only taken him about 2 to 2 1/2 hours but instead, it took him almost 3 1/2. Once we got there, they wheeled Ryan back to her room in the ER on the stretcher. A doctor came in and just started asking questions. I've never answered so many questions in my life at one time. I was terrified. I really cannot remember the last time I was this scared.

I took this pic with my cell phone in the ambulance. The first hospital had marked it with a sharpie so they could keep an eye on rather it would get bigger or smaller. We sat, and sat, and sat in the ER just waiting. I was getting worried that something had happened to Jay, and he FINALLY showed up. He was, of course, not very happy about the time it took him to get there. He just wanted to be with Ryan and he couldn't be. She was sleeping when he arrived and the doctor's came in and asked MORE questions. It seemed like everyone just wanted to talk to us, yet they weren't telling us ANYTHING. It was about midnight when Jay had shown up...time was going way to slow. At 2:30 am, Ryan was wheeled upstairs so they could get an ultrasound of her neck. She had already had an IV in because she recieved IV steroids and antibiotics on the way to the hospital. The results of the ultrasound showed that the lump was nothing but swollen lymph nodes. Ryan was admitted and given more IV antibiotics overnight.
Once we woke up, after only about 3-4 hours of sleep, an infectious disease doctor came in to examine Ryan. He decided that his diagnoses for her would be.....MRSA. Yes....MRSA, as in the worst staph infection you can get that cannot be treated with most antibiotics. The type of infection that once you get it, it stays dormant in your body FOREVER until it decides to show it's ugly self again. The type of staph infection that attacks heart valves and lungs....IS THIS GUY SERIOUS??? HOW CAN THIS BE HAPPENING??? This WILL NOT be good for her heart AT ALL!!!!
But then again, what makes him think it's MRSA?
There are a couple different ways to test for being a swab of the nose. It actually takes 3 different swabs over the course of 3 weeks. One swab per week. The other way, is blood cultures. The strange thing about this is, although Ryan's labs were run twice (the second time they got blood from her IV) no cultures were ever done. They had only swabbed her throat, and that was negative for strep and mono. Is anyone else confused here??
If you answered NO to this question....there is something wrong with you!! :)
Ryan was discharged at about noon on Sunday, and we decided we were going back to Cumberland to finish our vacation. The doc had given us the ok to take her back so we were looking forward to being out on the lake again. We got Ryan's prescriptions filled before we headed back down. The prescription was for a VERY STRONG dose of Clindomycin. The only antibiotic that gets rid of the MRSA infection (although it will stay in your body forever, the meds can get rid of the current infection.)
We got back to the boat and finished our trip and had a really good time, although we were exhausted!!! Once we got home, yesterday afternoon, I decided to do some research on sudden lymph node swelling, and what I saw, made me sick to my stomach and I have felt this way since. I called Ryan's cardiologist today and discussed everything with him and he wants us to finish the meds that she was given...which smell awful by the way....and if her labs are still abnormal a week after she is off medication, then some more testing will be done. Her white blood count is high, her iron is low (they are saying she is anemic all of a sudden) her platellites were really high and her liver funtion is high. So, whatever it is that she has, it has started affecting her organs. The "thing" on the search that I did that has made me feel so sick...and the testing that Ryan will be getting if her labs don't become normal in a few weeks....Leukemia. Her cardiologist agrees that it would be a good idea to test for it if her blood work isn't back to normal after these meds. I am disgusted and terrified at the thought of this being the case, but it is a possibility and a reality that we just have to deal with. I will, of course, keep everyone posted. Please keep Ryan in your thoughts and prayers as we try our best to get her through everything. Thank you for everyone's love and continued support.