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04/23/10
The GUYS DID IT! Bataan march was a huge success for the guys who finished by running full speed through the finish line. They are all in perfect health and Pete was even able to shave 2 hours and 40 minutes off his time 5 years ago! THANK YOU so much Pete, Eugene, Luke and to everyone who sponsored them. Madison's fund was replenished, which was a HUGE relief, with so many happenings with her this year. Guys, I will forever be in your debt for taking on such an amazing feat and doing something so amazing for my daughter.
Several other things manifested through the awareness Bataan brought such as Woody Lingerfelt who is making birdhouses and selling them for Madison's fund! THANK YOU so much for doing that for her! It is very much appreciated!
We "think" we were able to figure out the complications from her last surgery. It looks like Madison got something called Serum sickness from exposure to cephalosporin drugs, which she obviously can never have again. Serum sickness can give you rash, edema, joint pain and swelling and can cause anaphylactic shock if not treated right away.
Since the trigger has been uncovered, we have scheduled her next surgery for May 11th. She will receive new ear tubes and a quick ENT review of systems. Hopefully this will go off without a hitch as her dance recital is that same week. I am working with Children's healthcare of Atlanta to do a fundraiser for the Digeorge clinic this summer.
The clinic is one of the only ones in the southeast and is shrinking in size because they have absolutely no funding. I met with pitcher for the Chicago Cubs, Ryan Dempster, this month to discuss raising funds to help his foundation http://www.dempsterfamilyfoundation.org/ and it got me pumped up and ready to work on our hometown clinic.
I am hoping for a lot of support so that the clinic that continues to save & maintain my daughters life can remain open. BTW, did you know 100% of your United Way funds can be directed specifically to that clinic? Email me for more info! Please keep Maddy in your prayers May 11th. It is supposed to be an in and out kind of thing...but so was the last surgery and it took about 21 days to recover!
We know this one will be better :~)
02/27/10
Madison has made great improvements this past week. In retrospect, I can't believe what happened to her little body and how crazy the whole thing was. Seeing her legs so swollen and purple with her knees doubled in size was really scary. A week later, her color is 90% back to normal, no more swelling but she is still itchy.
She has started to taper off all the meds and seems to be okay. We still do not know what caused this so she has to undergo allergy testing in 4 weeks. I am hopeful that they will find what it is she is allergic to so that we can continue with the two other procedures she needs to have done. If she wasn't always in the OR I wouldn't be as concerned, but it is really a race against time as we know that she will be back in that environment again soon...hopefully it'll be under our direction, not hers :)
A couple weeks ago when she had stomach pains her heart couldn't take the stress and wouldn't oxygenate her body, again in retrospect, that makes me realize I need to be more on guard. With the small break we had in hospitalizations last year, I guess I let my guard down a bit. I had even un-packed my hospital bag for the first time in 6 years. It is now repacked and even at the front door. My guard is back up, I am taking my defensive stance and am once again ready to fight for my daughter.
Please make sure that you visit the "events" page to read about the three runners doing the Bataan march next month. These three men have been training for 1 year to do this march in hopes of raising funds for Madison's medical bills. We have been up to our eyebrows just since January 1 with medical bills and her prescriptions, one of which costs $250.00 after insurance. No letting up as she has at least two more procedures in the next 2 months.
These three men are true hero's for putting their life on hold to train and then march in this unbelievable event for Madison. When you see Pete, Eugene or Luke please let them know what amazing men they are!
02/21/10
Ah, so much can happen in a week! After we got Maddy home and settled in after her surgery we discovered a little rash on her chest. The next morning it was all over her trunk so we called the DDS and had her antibiotic changed. She had to take a 10 day course to prevent infection in her heart post-op. He changed it and we gave her benedryl and within 24 hours it was 100x worse, now all over her body.
We then stopped all the antibiotics fearing anaphylaxis and upped the benedryl. By that afternoon her legs had a severe case of edema and were so swollen they were a dark shade of purple. THATS when I took her to the ER. They still do not know what is causing this...allergy to something they gave her in the OR, allergy to the antibiotic, or something called serum sickness which in a nut shell is where your body freaks out because of a foreign something you put in it and you have an abnormal autoimmune response.
So now she is off antibiotics, which scares me to death, and on benedryl, zantac (which is an antihistamine) and a round of steroids. The rash is getting better, but the edema is still hanging around. I filled seven drugs in three days for her and nothing is really working.
Ear tube surgery has been temporarilycancelled due to the fact that if it was something in the OR that set her off, the next reaction could be fatal. We also have to worry because steroids make you more prone to infection. Fabulous. And people say, "well, its just dental work, right?" yeah...just dental work... I am starting to loose track of the times we have been to Egleston hospital in the past 30 days...4? 5? maybe even 6?
I need some answers so I am heading back to the trenches again tomorrow. I am looking for an answer and protection for her, please see that happening for us.
02/16/10
This morning Maddy had her oral surgery. I went in feeling better than I left, unfortunately. They were able to extract the baby teeth that once again would just NOT fall out, and then he went in to work on the molars. When he got done he came in and said that he is going to "go down swinging" trying to save these two teeth.
They came in bad (because she was so sick in infancy) and keep getting worse. there is not enough tooth to hold a filling, and not enough roots to do a root canal to save the tooth. If there is any more damage to the tooth in the next 2 years, while the root is growing in, he will have to remove them. Mind you, he has already had to work on them twice in the past 6 months.
Worse yet, leaving them with these temporary crowns makes them more susceptible to infection and abscess. I can't believe I am even discussing removing permanent teeth from a 7 year old! Who ever heard of such a thing?!?! Two years...no infection, no cavities.
There it is universe! That's what I want, that's what I need and that's what you'll give me :) Nine more days until the next surgery...
01/29/10
Maddy was admitted last weekend for severe abdominal pain. Although we never found the source of the pain, it seems to have gotten better on its own and she was released 2 days later. Worse than that, she had a very hard time with the level of pain. Her oxygen levels quickly dropped into the low 90s and she had to be urgently placed on oxygen upon arrival. Her sugar levels were through the roof from stress and her resting heart rate was 155.
I was very afraid until they finally sedated her. Although she hasn't been admitted in a long time, it quickly reaffirmed to me that she doesn't need to be away from me in a setting (school) where something can happen so quickly. This all happened within 3 hours. Had she been in school, I am not sure what would have happened, she just gets too sick too fast. Its unreal. Although we do not know what set it off, no infection, no virus, no bug of any sort, she is starting to eat again and get regrouped. Thats good news.
I wanted to thank two people who instantly stepped up to help with the laptop Maddy needed for school. Before we even hardly had time to post it, they were there ready to figure it out for her, and DID THEY EVER!!!! Maddy now has a brand new pink laptop with a pink mouse! She has been using it everyday for school and the school is even going to load special software on it just for her.
Dan brought it to her in the hospital and she was able to watch movies, do some school work and play on the internet. She tells everyone, "I have my own laptop...and its PINK!" thank you guys so much for making that happen so quick. Brand new, so perfect, I just don't know what to say. This gift will truly offer her a better opportunity in life. Thank you for caring enough to do this, we are forever forever grateful!
Up coming...
2/9/10 Pre-op
2/16/10 oral surgery
2/25/10 ENT surgery.....
Please keep us in your prayers!
01/15/10
Maddy medical update. We have had sooo much gong on the past two weeks, here is the scoop. February 25th she is scheduled to get new ear tubes, as her right ear especially is full of fluid. Soon after, date TBD, she will also be going to the OR for more dental work. The teeth she had filled just 6 months ago already have new cavities and she will require them all to be crowned. That is a 2 hour procedure while she is intubated.
Today we went to cardiology and scored three for three :( Before spring, as she should only be sedated every 6 weeks, she will have a 4D MRI of her heart while intubated under anesthesia. Her heart looked to be about 10% worse than 8 months ago and he is hoping that we can get another year or two out of the valve.
The MRI is the first step in closely monitoring where we stand and what moves we make next. Three trips to the operating room, every six weeks...not happy about that. However, nothing is major and everything thus far is fixable. We see her coming through all of this better than she went in and surround her with healing love and light!
01/02/10
Having been called things like failure to thrive, critically ill and medically fragile, its hard to believe that tomorrow morning you'll be seven years old. Not just 7, but a happy, smart, beautiful, prescription drug free seven years old. Where your life has taken me, I never could have prepared for.
I still can't express with words the depths we have dove into and the heights we have conquered, but what a ride it has been. Not many people can say they have had truly countless operations, 2 of them having been open heart and lived to tell about it. Hundreds upon hundreds of days admitted to a hospital room and every test known to man performed on your tiny little body all while I questioned, "what the hell am I doing to her?" Now I know.
I see you ride your bike and play baseball in the yard, I see you yell at your brother and pick up curse words like you spent 6 months in the military and I now know. You aren't just alive, but you live. You live and remind everyone around you to live. We throw out the rules and play in the rain, we cut school early to go out for ice cream and we have cold spaghetti right out of the tupperware for breakfast simply because we want to.
All those days I wondered why and now everyday you show me. Because I wouldn't know the highs if we hadn't been through the lows, I wouldn't know the peace if I hadn't known the chaos, and it was the hate I had for what ailed you that showed me the intense love that I have for you. These have certainly been the hardest 7 years of my life, but they have also been the most rewarding.
As a parent you always expect to show your child the way, but in this case it was the complete opposite. Thank you Maddy for taking me places that I never would have gone and thank you for reminding me not to just be alive, but to live.
Happy Birthday baby!
Madison's Update Archives
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