08/30/11

Madison had a LOT of doctor appointments the past 2 weeks. She started out with dermatology to try to figure out why she develops an allergic reaction to every antibiotic given to her. She had 73 spots tested on her little back and only 1 of them came back with an allergy. It was a compound found in rubber...which she is not allergic to, UGH! She has never had an issue with rubber gloves or the rubber in her toys or waistband/clothing. Kind of frustrating.

The idea now is to keep ID #'s, lot #s and a complete list of ingredients of every drug she has and her reaction to it. They will then cross reference each ingredient with reaction on a spread sheet to try to find the common ingredient. Hopefully, this will work because it is going to be a lot of work! Today we visited ENT. I knew that she had a hole in her ear drum from an infection during spring break, but I didn't know that it had damaged her hearing pretty significantly.

Although he wants to wait to repair the hole, the damage is already enough that she has to go back into hearing aids. She has worn aids before because the damage was from antibiotics and her ears would recover, back to only a mild loss. This time the damage is permanent and is a moderate loss in her left ear.

To add insult to injury, Blue Cross Blue Shield will not cover hearing aid evaluations or the hearing aids themselves. We have reapplied for medicaid, Deeming Waiver, after she was dropped, but have not been approved yet. They called yesterday and said it'll be 4-6 more weeks before we hear anything.

Although we have gotten a lot dumped on us in the past 2 weeks, I am keeping my eyes forward and am getting excited about the Tri for Madison Triathlon next month! It's so nice to have something so positive to look forward to and I am so thankful for all who are swimming, biking and running...GO TEAM MADISON!

07/05/11

Madison is finally back home after having her dental procedure. Our out-patient procedure actually lasted 4 days in the hospital due to an allergic reaction to "something" in the operating room. Only hours after surgery she began to show signs of a reaction by displaying a rash and itching. Worried that it might be anaphylaxis, they admitted her. Thankfully, it never got that far and she was only slightly miserable with the itching. Having three drugs run through her IV kept her pretty comfortable.

She was admitted under general pediatrics, but was also seen by dermatology and immunology in hopes that there could be some answers as to why she keeps having reactions to antibiotics. Although we were not able to come up with a resolution, we were able to at least have them see the effects that the antibiotics were having on her and set some appointments up for hopefully getting answers on how to handle it.

The dentist was able to put her asleep and fill 10 huge cavities as well as apply several crowns with no issues (in her mouth). He came out an surprised me that it is time for braces! He said that her teeth do not meet at all except for 1 or 2 which she is damaging and that braces are required for eating to evolve. I can't even imagine her little faces with braces! Of course, we cant do the palate expander, bands or braces without antibiotics so everything is on hold until her allergy can be handled better.

Those appointments are scheduled for August. We will also meet with cardiology again soon. Madison has been seen grabbing her chest with any exurcion as well as when she is eating. Her heart rhythm seems very unstable all of a sudden and although he told me he saw some arrythmias, I worry that we will face consequences soon if we don't get a better handle or understanding of it.

Please keep us in your prayers as I begin the fight for her Deeming Waiver tuesday. This will allow her to have medicaid as a secondary insurance again which we are desperate for. I am expecting a huge battle (from what I have heard from other people) and am feeling overwhelmed before I even try for it. Praying that God send me strength and determination as I move forward.

06/06/11

On June 21, Madison will undergo her next procedure which will take place in the operating room at Egleston. She will be put to sleep in order to have extensive dental work performed. Although the dentist can not tell for sure what we are looking at, we know for sure that she will receive seven crowns on her back teeth. Her teeth came in with cavities already in them because of the lack of saliva flow from her early years as well as her having such poor general health the first 5-6 years of life.

These crowns will hopefully help her to be more pain free and to help her bite fit better until her adult teeth come in back there. We haven't even had our post-op visit from the last surgery and we are already having pre-op for the next one. Kind of frustrating. Because this operation will deal with her mouth, she must have antibiotics which means we will have the concern of auto-immune issues arising.

The past couple of doses she has had required ER visits because of the rash and swelling that come after having antibiotics. Hopefully pre-treating with benedryl, steroids and zantac will help prevent complications from the antibiotics.

In between all this fuss, Madison was able to preform in her tap recital and she did AMAZING!!!! She performed all of her steps, even though she said it hurt, and she even took a special bow at the end...the girl loves applause :~) Because she is 8 1/2 and is still in the kindergarten class, we are deciding whether or not to keep her dancing. She has a real talent for it, and loves it so much but the class is advancing faster than she can keep up. I certainly do not want it to be a point of frustration.

We have started to look into art classes, hopefully we will have good news to report on that soon! Thanks for thinking of Madison and for checking out her webpage. We are forever grateful for our friends and family <3

05/14/11

Madison's surgery was a successful event, but a very difficult one. Unfortunately her old Port-a-cath was completely tangled in scar tissue so there was a lot of scraping and cutting in order to get it out. Although the surgeon tried to reattach a new one on the same left side, he was unable to cross her chest with the threaded line because of even more scar tissue from her previous open-heart surgeries.

He took the course of making a new 2-3 inch incision on her right side and placing the new port there. On the way home she became sick to her stomach and she remained violently ill for 10 hours. She was very dehydrated and it was a scary time. I was able to drop 2cc of coconut water into her g-tube every 5 minutes (all night!) to keep her afloat.

Thank goodness the next morning she felt so much better and was able to keep fluids down. Sadly her GI tract had other ideas and we spent the next 3 days fighting dehydration. Now that she is eating and drinking, her strength is so much better but the pain still remains. 6 days later she is bruised and swollen all over both shoulders and both pec's.

Her dance recital is in 6 days and I am still not sure how she will be able to do it. Madison has a lot of determination and I would be very surprised if I don't find her up on that stage doing her thing 6 days from now :~) The Port offers Madison the comfort of knowing that when she goes to the OR or the ER for that matter, they can access a line in one clean shot and get her feeling better ASAP. It also allows her to take IV antibiotics at home instead of being admitted.

Although this surgery was more than we anticipated, her surgeon did an AMAZING job and we are so thankful for him. We are also thankful that she now has instant IV access! In the middle of all of this going on, her cardiologist called to tell us that he was surprised to see Madison having PVC's on her monitor results. Although he isn't worried at this time, because it happened in less than 2% of her heat beats, it is something very serious that needs to be watched.

She is already symptomatic of having VT's where she can feel her heart stop and restart or suddenly raise her heart beat to 105 for no reason. She struggles going up stairs and in tap class...all of which is new. So yes, this is something new and will probably require medicine or intervention as the scar tissue continues to grow and cause problems, but I won't bother dragging tomorrows clouds into today's sunshine.

Thank you so very, very much for your continued support of my daughter and for you prayers and well wishes. Begin the recital countdown!!!!

05/04/11

So many things have happened since I last wrote. Madison was dropped like a hot potato by Medicaid disability. I was informed that they periodically "clean house" and ask folks to reapply if needed to weed out the ones too lazy or undeserving to do it. Although I agree there are a few bad apples, children should be the exception. If a child is unable to attend school for YEARS, then obviously there is a disability. If there heart has been opened and repaired twice, obviously there is a disability, if there are pieces of chromosomes missing, obviously there is a disability. What is not obvious is why they dropped her and how bad this will effect her and our family.

As of now, it has resulted in her losing physical therapy which was helping with her scoliosis, endurance, balance and her anterior rotated hip. She can no longer sit criss-cross or on the floor at all without laying down. She has also had great reduction in her occupational therapy. She can now only go once per month instead of weekly. OT helps her write, and helps with daily living skills as well as helping with her orientation in public.

Speech is now received through the public school for free which is exciting but very dangerous for her to be receiving in an area with other kids. Mind you that Madison can not receive immunizations like most all public school kids have because even the shot itself would be too dangerous to her health. This problem of losing medicaid has come at a very bad time. Madison has a leak in her Port and is having surgery on Thursday to replace it. I just received a call to tell me that I need to bring with me $250.00 to cover the amount not paid by insurance or the surgery wont happen.

A month ago Madison busted an ear drum and both tubes fell out meaning she will have to have that fixed in the OR as well. That date has yet to be determined. Compounding the issues already stated is the fact that Madison is suddenly complaining her heart is "beeping too hard" when she walks up stairs or dances in ballet. We took her to cardiology and the echo was stable as well as the EKG but we had to have her wear a holter heart monitor for 24 hours to see of the episode could be caught on EKG. the results will be in this week. When I turned the monitor back in I told the nurse about the previous night at ballet where Madison was grabbing her chest and leaning against the wall telling me her "heart hurt."

Cardiology says these episodes are probably arrhythmia's caused from scar tissue and may require prescription beta blockers or possibly something a bit more scary. The is the first time in 8 years, her whole life, that we have seen her react this way and it is very, very scary. So now we are off to the operating room on Thursday to get her Port fixed and then moving onto cardiology and ENT to see about her other problems.

There is a lot on our plates but I am trying to find the determination to tackle the state on filing for disability once again. I cant begin to express the amount of paper work that goes into this and the time involved, it's a crying shame they make people endure this who are already dealing with so much. Praying for a brighter summer with less problems and approval from medicaid so that Madison can have secondary insurance once again.

02/05/11

Well that only took FIVE months, but the G-tube infection is finally clear! It took 7 specialists to finally figure out the best way to handle it, and that was by having the dermatology wound-care team gut the infection out. I have to say out of all the things we’ve been through, that was one of the worst. She was wide-awake, held down by 4 other people while 3 “operated” on her. There was no sedation, and I swear the numbing medicine, given by 7 shots to her belly, had zero effect on her.

They stitched her up and let her sit up and she finally stopped screaming realizing she was done. She asked the nurse, “Is it all better now?” the nurse said she thought that it would be all better in a couple days and Maddy said, “That’s good news, can I have a sticker now?” Lord, she did better than me. I had to cry ½ the way home while she slept. It was horrible, but the infection is GONE. Seems her body just couldn’t find enough immunity to clear the whole thing out.

Since then we have only seen GI once, and the dentist once. One of them went well, the other had more bad news. The dentist saw that Madison’s gums are receding on her bottom two teeth and that she will soon need a “gum transplant.” Who even knew there was such a thing? They will take her to the OR and transplant healthy gum from another area of her mouth and surgically stitch it where her gums are too low. Thank God we still have that G-tube because I am suspecting eating will not be something she will want to do for a while. I’ve heard from other DiGeorge parents this is a pretty common anomaly for them but it is a pretty painful procedure and recovery.

School wise she is kicking some tail! We are still homeschooling and she LOVES anything and everything geography related. Math, not so much. I am planning on homeschooling her again next year since she is flourishing and hasn’t gotten sick one time this winter. She is safe from germs; able to learn when she feels well and doesn’t have to deal with any more anxiety than necessary. My plan is to repeat 1st grade math, but move her ahead in everything else. She is already doing 4th grade geography and can tell you all the capitols of every city! What a Rockstar. :~)

Madison's Update Archives

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