Tuesday, September 30, 2008

Also Touch...

So often people do not understand the severity of Madeline's disease. Luckily, she is responding very well to her meds. I feel good on her progress and am optimistic about her future. But then my bubble gets busted…This morning, I read on a blog about others who are not so lucky and I can't help but worry if this could happen to our baby. My heart breaks for this family.

Blog submission...
At today's checkpoint, while eating our chocolate and peanut butter, we finally had a chance to ask some members of Team "Also Touch" what exactly their team was. They have these cool jerseys with a big red heart that says"Also Touch" in the center, a Spongebob Squarepants on one sleeve and the photos of a young girl on the other. There are about a dozen of them, all ages, mostly men, and all of their bikes (a range of high end road bikes to a recumbant) all had a stuffed Spongebob pinned to their seatbag. Well, Bart, a young guy from Northern Cal explained to us that he met Dwight, another Northern Cal rider, on the ride last year and when Dwight decided he wanted to actually form a team for 2008, Bart and several others joined him. In 2005, Dwight's daughter, Christiana, passed away from Juvenile Dermatomyositis at the age of 10. He is doing this ride and raising money in her honer and the others on the team are either friends from home or people he met on the ride. "Also Touch" comes from her diary. She was very religious and the her diary entries often referenced verses from the Bible and her thanks to God for everyone who supports her and prays for her. She sounds like she was an amazing young woman. The last entry she ever wrote was "..and please God, also touch" and then it stopped. She didn't get to complete the entry before she passed away. So Dwight has named the team "Also Touch". Her favorite character was Spongebob which is why they all have Spongebobs on their bikes and jerseys. It is a sad, beautiful and inspiring story. They are a great team out there. Even though most of them look like they could finish each day in about 4 hours, they take their time enjoying the sights and local establishments, and eat together at the end of the night with plenty of "recovery" beer and wine. How do I know this? Because they often let me cool our own beer in their coolers. Thanks Also Touch!

Monday, September 29, 2008

I'm not having a good day

I'm having a bad day. I don't know if it's a Monday pity party or what, but I'm just down. I really shouldn't be though. Madeline is really doing well. We have adjusted to her new lifestyle okay. And she doesn't really have the emotional personality issues any longer. I'm just sad...or maybe mad.

I hate that she will not be able to go to camp in the summer, that she will not get to lay out with her friends by the pool and get that ever so desired tan every teenage girl wants. I hate anytime she spends the night with someone I have to go over and give her her medication. I hate we have to miss school and work to travel to her doctor's appointment in Texas. I hate having to wonder each day if she is going to not be able to get out of bed or walk when we wake her in the morning. I hate worrying if she is going to catch a virus she can't get over. I hate the worry of what these drugs are doing to her body. Will she be able to have children? Will she ever go in remission? Will we always have to live on pins and needles?

Okay...guess I'm mad. I hate this...I wish I could go back in time and just stay there. It would be easier.

Friday, September 26, 2008

Alot of pills

We just finished taking all of Madeline's meds - a total of eight pills right now. I hate giving her all of these drugs, but in the same breath thank God for modern medicine. She is complaining that her ribs are hurting, but I believe this is due to all of her coughing. I too would be sore if I coughed as much as she is doing.

We just got back from our local high school football game. It was a rough one with a very, very large loss. Kids had fun though, as well as we did. Thanks goodness it's the weekend - we all need a rest.

Thursday, September 25, 2008

Bumps on face













I've attached the photo of Madeline's bumps on her face which I mentioned in my last post. Isn't this odd how they are in a perfect line? It almost appears as if something crawled down and took a little nibble along the way.

Any ideas?

Wednesday, September 24, 2008

My daughter is ravenous

Madeline's medicine is kicking in well. She is coughing her head off, but the congestion is loosening up which is a good thing. Madeline was prescribed a four day stint of prednisone and it's been interesting seeing how ravenous this medication has made her. Prednisone is the common first line drug for JDM and so many parents have to deal/manage its side effect of weight gain. I can see how that is an issue. Madeline has only had two doses and she can't eat enough.

Madeline has the oddest bumps on her face right now. I will snap a of picture of it and put it on tomorrow. It is five bumps in a perfect line. And when I say perfect line, I mean exact line. Weird.

Monday, September 22, 2008

I'm a bad mother...

Madeline had a rough night last night. She woke up crying with a bad ear ache.

I brought Madeline to see our ENT - Dr. W (not to be confused w/ our rheumatologist). Poor thing, her ear is very infected and bulging. Dr. W was shocked she was not in more pain. She also has a sinus infection, throat, chest...well you get the idea. I also learned a new lesson. Dr. W said with Madeline's condition if she does not improve in five days to call him immediately for an appointment. With her suppressed immune system she does not need to wait so long for a prescription of an antibiotic. I feel like a terrible mother.

She was given mucinex D, cefdinir 300 mg twice a day and prednisone 20 mg one a day for four days. That should do the trick...I hope.

The trooper she is Madeline still went to pointe tonight. We then went to watch Trey and Daddy at football practice. I hope she sleeps better tonight. She obviously has a high pain tolerance.

Sunday, September 21, 2008

Ear ache

Madeline's upper respiratory issues are back. She is now complaining of an ear ache. I will call our ENT in the a.m. to make her an appointment. She looks great though and seems to be feeling well too.

We have our upcoming doctor's appointment scheduled October 9, which is just around the corner. I tried calling our doc (which is in Houston), but no one answered. I will try again for I am concerned that their Beaumont satellite office experienced hurricane damage. That area of Texas and south Louisiana was hit hard by Ike.

She had dance on Saturday and was not very tired at all. She seems to rarely complain of her tiredness these days. Great news.



Friday, September 19, 2008

Doesn't she look good?



I found this on my camera last night - Madeline clicking her self portrait. She looks great. I know she is not in remission, but she is getting better each day. I not only see it, but feel it in my gut.

Tuesday, September 16, 2008

Is she experiencing neuropathy?

Madeline has taken a turn for the better in regards to her cold - wonderful. But, this morning she experienced her legs feeling funny again. She's done this on and off since beginning her treatment. She only complains of this odd, tickling feeling (as she explains it) in the mornings.

It's always when I am ready to do her hair. She comes to my bathroom and sits by the jacuzzi and rubs her feet. She says they feel funny, tickle, then have a burning feel to them. My first thought is always...it's the JDM ready to attack. But, this morning it hit me that my dad has the same problems, but for him it's neuropathy.

I looked up Madeline's medication side effects tonight and I've attached what it says about cyclosporine. What did we do before Google??? Seems to me - the cyclosporine is the culprit.

Cyclopsorine side effects:
The most common and potentially serious side effects are high blood pressure and kidney problems. Both problems are more likely to occur in elderly people who take this medication. Approximately a quarter of patients taking cyclosporine for rheumatoid arthritis develop mild to moderate high blood pressure. Approximately half of patients develop mild kidney problems while on this medication, and may need to adjust their dosage or discontinue the medication. Kidney function usually improves after stopping the medication. Because this medication affects the kidney, cyclosporine can cause gout in some individuals or worsen underlying gout in others. Other commonly experienced side effects include headaches, nausea, vomiting, abdominal pain or dyspepsia, and swelling of the hands or feet. In addition, approximately 10 percent of patients taking cyclosporine may develop tremors, increased hair growth, muscle cramps, or numbness and tingling of the hands or feet (known as neuropathy). Some patients taking cyclosporine develop swelling of the gums. Brushing and flossing regularly may help to prevent this.

Sunday, September 14, 2008

I plan to call the doc...

Madeline is still not quite herself. Her cold is lingering and she has a nasty, deep cough. I think she needs to get a chest x-ray. I will call her doctor in Houston tomorrow to see what he thinks. Well, I hope I can get in touch with him since Ike ransacked Houston. Will keep you posted.

Saturday, September 13, 2008

We still have electricity!

We've made it without losing electricity - Hallelujah! Others around us did not. Hopefully they will be back up with service soon.

Madeline's had somewhat of an emotional day. She's not had a day like this since spring. It was a crying, tired, very irritable kind of day. I sometimes wonder if I am reading too much into it or if it's just her growing up (hormones do crazy things). Then, I also thought she just had a rash and we all know how that went. It may be her lingering cold making her not feel well. Oh, now her dad has it. He feels terrible. I guess we'll all get to experience these cooties.

Friday, September 12, 2008

Chest cold and Hurricane Ike

Madeline is feeling better today. She still has a stuffy nose and congestion in her chest, but her mood and tiredness has improved.

We are dealing with another hurricane - Ike. We are not directly in the track but located east of the eye. As I type, it is pouring outside and the wind is whipping around. We are glued to the Weather Channel and Fox News watching the sadness of this storm in areas we are so familiar with. We are also worried about our doctor who lives in Houston. I hope he and his family left.

We are concerned about flooding in our area. Several days after Gustav, our community felt the effects with flooding. Our bayous, rivers, and ground are saturated with rain water. More rain may mean more trees falling over when they become top heavy from the wet ground.

I don't know if we will lose electricity again. Please pray this storm is not as rough for us, but especially for those on the coasts of Texas and Louisiana.

I've got to get Madeline her methotraxate and cyclosporine. Good night.

Thursday, September 11, 2008

It's in her chest

Madeline sounds terrible. The cold has not entered her chest. She is not running fever, so I am refraining from having a panic attack. Of course, it did not help when I heard on TV this morning about a new super bug. I've got to stop watching the news.

Madeline is very tired. I've had a hard time getting her up and going these past two days. Luckily, the weekend is almost here.

Gosh, I hope she gets over this quickly.

Tuesday, September 9, 2008

And she has a cold...

During Gustav, the kids were out of school for the entire week. They started back yesterday and Madeline came home with a nasty cold. I've dreaded this since school started, and we are only in week three. Here we go. I know I'm going to become obsessed with watching to see if it gets into her lungs - my biggest fear.

As for her skin and the other effects of JDM- she is doing wonderful. We are all a little tired still from living out of a box and not having electricity. But thank God Ike is not coming our way. I don't wish that on anyone, but we really could not of handled another storm like the last.

Saturday, September 6, 2008

Five days of Gustav

Where to begin...I guess at the beginning.

Monday - My last blog was on the day of the hurricane. I had planned to write daily on what was going on in the area, but was so busy I never had a chance. I stayed at the hospital until around 6 p.m. when I decided to ride out the storm at home. I planned to just go back the next morning or be called out during the night, if needed. The wind and rain was impressive. When Gustav hit our area, it was a category 1 hurricane. We watched the hurricane action curiously until dark. The trees bent with the wind and the rain poured with a bullet force. My in-laws, sister-in-law and five dogs moved into our home during the hurricane. And then...our lights went out. I had started cooking chicken and sausage gumbo and Rick brought it quickly outside to finish cooking on the pit (there's more to that story I will tell later). Then, the trees began to fall. I don't know if tornadoes were making the trees fall or if it was the wind. But they fell, everywhere in our neighborhood.

The kids and my in-laws began playing a card game to pass the time and ease nerves. It worked. I paced and paced. I hated not begin able to see what may or may not happen. We finally decided to go to bed. We opened the windows for air, but all there really was was humidity beyond breathable. House alarms went off all night and the wind blew and rain poured constantly. We slept on top of the beds since it was so hot. Around this time, I wished I had stayed at the hospital.

Tuesday - The day after the hurricane Rick and I got up early to evaluate the damage. The yard was a mess. We lost some trees, but none I was too upset about. All of my magnolias were fine - thank goodness. The house was fine. We were fine. But - no electricity. I then went into work and got dressed in my office. I had a full day with media, command center, staff issues, etc. I think I worked until late in the evening. Rick and the kids decided to move up to the hospital with me since we had cable, food, A/C, etc. The news informed us it was going to be a while before we had electricity again. We had a hard time sleeping at the hospital, but at least we were not sweating bullets. It rained a lot during the night.

Wednesday - I was awaken at 6 a.m. when my cell phone rang and it was the hospital letting me know they had activated Plan D (disaster plan). The hospital was flooding. We had received almost 5 - 7 inches of rain through the night and many areas of our city, specifically downtown, was flooding. Another long, long day. I had a lot of media, employee communications, hand-on work to do on this day. I don't even remember when I stopped working. We had to move an entire floor of the hospital into our main hospital - not an easy feat, but was accomplished. The ER was nuts. People were getting really hot, shelter people were brought in constantly and the staff was exhausted and worrying about their homes. At this point, I had not bathed in several days and looked/felt disgusting. One of my employees who had the luxury of electricity invited us to come over and bath. It was wonderful. Boy, the simple things in life are the best. While washing Madeline's hair, she mentioned to me that the skin on her feet are sluffing off again. She did this with both her hands and feet before the face rash began on her around this time last year. I told her we needed to watch this. I panicked inside a little.

Thursday - We slept better, probably from pure exhaustion. The kids were being so good during this entire event. And Rick was so wonderful taking care of them since I was working constantly. Rick even helped out at the hospital delivering food trays to our 276 patients. We were low on all of our staff due to the hurricane and flooding so we were doing a little bit of everything. We still had no electricity so planned to stay again at the hospital. No one else in my family had electricity either. That evening, we decided to go to Sam's to buy a generator. We had already lost all of our food in the two refrigerators at home and decided we would not do that again. When we got to Sam's I asked Trey to call his friend to see if we had electricity. We DID! Praise the Lord! We hauled butt to the hospital to pick up our items and went quickly home. When I walked into the house, I SMELLED SMOKE. Looking around briskly I saw the source - the stove. I had washed some dishes and laid a beach towel over the area with all of the dishes thinking once the electricity was back I would put them in the dishwasher. All of the items were burnt and black. When we lost our electricity I was cooking gumbo. Rick took the gumbo and in all the commotion I forgot to turn off the stove. When we gained electricity, it heated up and began to burn. Thank God we came home when we did. 30 minutes later the house surely would of been on fire. I then tried to get my parents to come over. They are in their 70's, but refused to come home with us. Hardheaded. We went home took baths and went to bed - life is good. OH - it was our 15th wedding anniversary, how romantic, huh? :)

Friday - I woke up exhausted, but slowly got up and went to work - another full day. We went to the grocery store to buy milk, eggs, etc., but there is none to be found. They are handing out ice, dry ice and MREs, but we don't feel righting getting any since we are fortunate to have electricity, so many don't still.

Saturday - I think we are getting back to normal. Most of my family now have electricity. Grocery stores are getting produce, milk in...yea, we have eggs. I am still so exhausted. I plan to rest as much as I can...for now. We watched the weather channel and see another hurricane coming our way...it's name is Ike.

I hate 2008...it's not been a good year. I can't wait for it to be OVER!

Monday, September 1, 2008

I'm at the hospital


Well, today's the day. I didn't sleep much last night for I had to pack to stay at the hospital through the duration of the storm. I'm nervous leaving Rick and the kids. I know Rick will take perfect care of them, but being separated is tough. I hope lines of communication stay open so I can speak to them through the duration.
We've been hit hard with patients at the hospital - NICU, PICU, ICU diversion. The ER is packed and we have a medical needs shelter located next door to us. Since we are this busy now, I can only guess how nuts it will be come tomorrow. For those of you who do not know, I am a vice president at a hospital. My main responsibilities include public relations, marketing and business development. I'm also the hospital spokesperson. I started doing media interviews and sending releases yesterday. In situations like this, I also do whatever else is necessary.
I plan to take pics through the "event" to post online. I should have computer access here since we at the hospital have back up generators. Wish us luck!

New Years Eve 2007

New Years Eve 2007
Her rash on New Year Eve 2007. We were treating at this time as poison ivy.

Madeline, January 2008

Madeline, January 2008
Here is a picture of Madeline (2008) at her classroom birthday party. Here you will notice her malar rash and grottron's papules on her hands. Of course at this time we had no idea what was going on.

Madeline, January 2009

Madeline, January 2009
Here is a picture of Madeline at her 9th birthday party. The only redness you see now is the nornal redness from running around at your birthday party. My, what a difference a year makes.