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11/15/10

Madison still has an issue with her g-tube and we aren't sure whether to call it cellulitous or an abscess, but either way, it has to be treated. She has been running random fevers which means her body is starting to stress about whatever germ is there. We have been to SIX specialists and have tried several methods of treatment so it is time to get more aggressive.

The plan is to send her this week to have an ultra-sound of the area to see how far the infection spreads, luckily it looks pretty localized. She will then be admitted to the hospital and sent to the OR to have her g-tube removed and stomach closed up. She will remain admitted on IV antibiotics to kill whatever germ s remain and she will be fed intravenously to help maintain her weight.

Depending on the results of the culture that they will draw in the OR, she will go back to the operating room in 3-7 days to have a new g-tube put in. A specialized wound-care team will deal with the old feeding tube site to make sure it closes and heals properly. Healing seems to be a pretty big issue that Madison has. There were no talks about her going without a feeding tube altogether. Although she is finally 40 pounds (!!!!!)

She is still diagnosed as failure to thrive and is too small for her age. She still has a lot on her plate and no weight to spare. We do not have a set date yet although it should be soon. I'll post again when I know when we go so that you can send love and light her way!!! Many thanks for your continued prayers through all the years.

10/04/10

The past couple weeks have been a blur. Maddy had a pretty nasty abscess at the site of her g-tube and we did 2 rounds of antibiotics to clear it up. When that didn't work, we went on a different drug and within three hours Madison went into Serum sickness again. A rash from head to toe, feet so swollen she couldn't walk..same this as back in February. Obviously we were on a completely different family of drugs so this really makes no sense what so ever as to why she is doing this.

GI passed her onto Immunology who has now passed her onto Infectious disease. She is now on no antibiotics, however they infection actually looks better! We do have her on THREE different antihistamines to try to keep the swelling and itching down and they are working well. When the medicine wears off we know it though! It starts right back up again. Today is day 5 since we gave her the one dose of Clindamycin that set it off.

Prior to all of this we had been trying to treat her anxiety, but the results were horrid. She became completely different than her normal self and was out of control. When even Ben couldn't handle it anymore we decided to forget it and go back to her normal anxiety. We plan on working on it through homeopathic medicine once again. The drugs just do not work for her. I will however take her in to have her analyzed so at least we know what it is we are dealing with and get a base line in case something worse creeps up one day.

Today we went to the new Orthopedic. If you remember the last one we saw refused to give me details or good/bad scenarios and told me that her leg pain was in her head...twice. So, the new Doc, who I really liked told me that her spine is not at a 28 degree curve and that it is very common with DiGeorge kids to have near muscular scoliosis.

He also said 99.9% have to have their spines fixed. He said that we are looking at inserting growth rods into her spine in about 4 years, give or take. He said she will not be well into her teens, it will be before then. He also said where they used to wait until they had a 50 degree curve, they wont do that because it will compromise her enlarged heart.

I think when we first went to Ortho her spine was 12 degrees, so age 12 sounds about right for fixing it. We are staying with this guy because he was nice and because he had the decency to tell me what was up. So, whats next??? Heck, even I don't always know! First we need to get over the serum sickness (round 2), next make sure the g-tube infection is clear, then get a psych consult and open up that can of worms. Whew!

On a GREAT note, Madison hasn't missed a day of school, and is 100% on target for the first grade. She has her new special chair for her to learn in and is still loving every minute of it. Thank you God for giving me the strength to decide to homeschool. BEST decision I ever, ever made.

09/19/10

This week Madison saw her Immunologist who is a HUGE help with the whole syndrome. We discussed putting her on medicine for vitamin D because of her hypoparathyroidism. I know that will usually get worse with age, so we are starting to protect her more in that area. I also asked her about the stiff neck and limited range of motion Madison has been having for several months and it turns out that it could be very serious.

Sometimes with age these kids develop fused vertebrae and have to have the fixed surgically before there is nerve damage. Seven x-rays later, we are waiting for the results. Until then, there is no activity involving her neck or back. This problem is a doozy and we hope and pray that it really turns out to be something else. Sadly, the precursors are a heart defect, cleft palate and VPI, all of which she has. It is another mid-line problem that a lot of kids with Madison's syndrome have.

She was also forwarded to see a psychiatrist for her anxiety and OCD. We started medication for it a couple weeks ago, but they want a base line eval incase things worsen. Hopefully as she ages, she will be able to control more of it on her own through meditation and relaxation techniques.

Cardiology has given her clearance until 2012, as long as she has no major illness between now and then. In 2012 we will perform her 3rd open heart and get another new valve, hopefully...God willing that will be her next major surgery. I would love for the x-rays to read that her neck is fine, but I guess we will see what happens.

Thank you for always keeping her in your prayers. With me homeschooling her, we hope to keep her healthy and happy the rest of the year :~)

07/11/10

Madison has had a really good run of it this year. We have been to the operating room more times than I could count, but for lots of little stuff that I consider maintenance. Looks like we are heading to the OR again shortly for another dental issue, but maybe that will finally be it for 2010. Her cardiologist had a look at her newest MRI and was comfortable enough to say that we were in the clear for 2010 and probably 2011 as long as she didn't get sick. Any illness (flu/strep/infections) takes a huge toll on her heart and quickens it's failure. He predicted 2012 would be the year we went in for her next open-heart valve replacement. I was happy with that news!

In the mean time, we have been working on her getting situated with homeschooling. She has taken to it like a duck in water and is making huge strides! She has begun addition and subtraction and is learning about space exploration and kids in other countries. I absolutely love educating her, it has been very rewarding and she makes it such a pleasure.

We removed my office from upstairs and made it into a full time classroom for her. She loves having everything in it's place and I think it makes her feel more like she is in a class room. We are slowly gathering things to make the classroom a place she wants to be and is comfortable for her.

Aside from the dentist which we see soon, we will also see immunology for her blood work check up. I feel confident things will stay the same there. Hopefully, no surprises! We also will see audiology to discuss hearing aids again and Ortho to recheck her hips and scoliosis. Her right hip still seems to be worsening and I fear we are going to have to make some major decisions in that area. Leave it alone and risk arthritis, limited ability and pain...or surgically break the hip, pin and screw it into proper position and cast her for 12 weeks to 100% fix it. That's a decision I do not want to have to make.

If you speak with Maddy, you know all she talks about is travel, well...we are finally taking her on her first flight to San Francisco! She is over the moon excited and has spent days on her laptop googling places to visit while she is there. This trip will really be something for her to experience and I am excited thanks to Dan's travel points, we can do this with her and Ben.

Although we have had a lot of trips to CHOA this year, we have also had a lot of miraculous events, things I never thought I'd see her do. She was a flower girl at my brothers wedding, she began karate at Satori in Roswell (even with her g-tube and Port!), she learned to read and now the trip to California. We are so thankful that she is in such good health and is able to continue to grow and lead a productive life. She is full of love and life and every night before she falls asleep she screams across the house for all of us to hear, "THANK YOU GOD!" And in response we all yell back, THANK YOU GOD!

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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All donations go directly to Madison's fund. You may also choose to send a donation by mail to: Madison Faith c/o MCS P.O. Box 670374 Marietta, Georgia USA 30062