42 Days + $229,716 = A Second Chance

Bianca was born on 09.17.02 but she began to live life on 10.28.02.

The formula to Bianca's second chance at life goes as follows:

DIAGNOSIS

• Moderate acquired apnea - side effect from morphine dosage to alleviate pain - caused her to stop breathing twice in 48 hours - was bagged and once again she started breathing.
• Narcotic-induced depression - she was switched to methadone which dropped her pressure and made her lethargic.
• Severe Pseudomonas sepsis - infection so severe she had to be placed on IV administered antibiotics. Two catheter lines (Broviac) - at this time we almost lost her...11 days after birth. She was placed on a 21 day cycle of antibiotics. Half way through she pulled out the line and the second one was inserted.
• Mild thrush - due to prolong administration of antibiotics - overgrowth of fungus developed.
• Severe congenital Epidermolysis Bullosa diagnosis - confirmation received of her clinical diagnosis
• Moderate acquired anemia - due to the trauma of dressing changes and all the denuded areas of skin there was a lot of blood loss. This eventually led to a blood transfusion.
• High cal nutritional intake requirement - Special high calorie formula (24 Cal) was provided which helped in the steady weight gain during stay at the NICU.
• Possible cataracts - A thin membrane was noted over sections of the eyes. Possible trauma created an early onset of cataracts.

PROCEDURES PERFORMED

• Skin biopsy
• UVC placement
• Skin grafting on legs
• Skin grafting on hands
• Skin grafting on hands (2nd attempt)
• V.A.C. - Vacuum Assisted Closure on legs
• UAC placement
• Central venous catheter (cut-down)
• Second skin biopsy (punctured section on top right thigh)
• Lumbar puncture (possible infection that was life threatening)
• Echocardiogram
• Central venous catheter (2nd attempt cut-down)
• Blood transfusion

Days in the NICU

• 42

Total billed by insurance carrier

• $229,716 - up to October 16 - additional claims were received that quickly skyrockets that number passed $250K including the genetic testing a few months later that was an additional $4,500.

An average amount we spend today on a monthly basis for bandages is $2,333 give or take - and that's on a good month. Add more to that when there's additional breakdown, blistering and wounds. Nutrition is another big factor that we calculate surpasses $250 alone for Bee.

So in the twisted humor that we have slowly mastered in the last 9 years we can safely say that we have a million dollar child on our hands. Gives a whole new meaning to the term "high maintenance".

Next blog I'll give you some links to check out...awareness is the key to conquering this genetic condition. The numbers I listed above is for a mild-moderately involved child - I cannot begin to imagine nor do I pretend to know what a more medically involved child, who's much more severe than Bianca, can cost the average middle to low income family.
 
P.S. I invite you to Google some of the words or phrases you might not understand from the above. The more we spread awareness and understanding the more compassionate and willing our society will be to learn about our "not so perfect but very blessed" life. Not taking things for granted is the only thing we live for nowadays!

~*~Namaste~*~

Hanging w/daddy-o!

Serious Baby

She use to love her Little Einstein videos

Toothless Cutie

Bianca’s New Found Love for Meditation & Healing Music

In the quest to look for a more homeopathic way of helping Bianca cope with her pain I began experimenting with guided meditations. Over the last year we began incorporating meditation into Bee’s daily life. While it was wonderful to do the meditation 3 times a day – morning, during bandages and night – I quickly realized that it was not the best for the bandaging routine. At least not the guided meditations since they focus on what’s going on in our bodies at that particular moment. However these guided meditations are a wonderful way to start our mornings and a fantastic way to end our evenings. For our wound care routines we have decided to either read a book (no TV or distracting polluting sounds) or hear some instrumental healing music like Healing by Anugama. The sounds and flow of the music really helps Bee get into a relaxation mode during our wound care. She is much more at ease and in a good place ~ she still has her moments here and there but that is to be expected. We always wish we can wave that magic little wand we must have lost somewhere and make things 100% better.


So back to the morning and evening guided meditations that we have incorporated into our lives. There is a website I stumbled upon called Meditation Oasis many, many, many (okay drop one many I might be giving my age away here…) years ago. I have been actively meditating for quite some time and do it at least three times a week. Meditation Oasis released a children based bedtime meditation. It has been wonderful playing this for Bianca during the evening. I have extended it from just one meditation to two at nights. I created a playlist on my phone that is called Bee's Bedtime. I switch up the first meditation with one of Meditation Oasis' many other listed podcasts. The complete list is here: Meditation Oasis Podcast List - It's hard to pick a favorite but #5 - Simply Being, #14 - Beyond Pain, #18 - Gratitude Meditation and #25 - Discovering Peace are a few of the ones we use over and over again. An actual quote from Bianca yesterday was "Mom I was in such a deep sleep and relaxation that I didn't even make it to the second meditation for sleep!" - she enjoys it and I think helps her be more at ease with the pain that goes on through her little body almost hourly.

In the mornings there is one special YouTube video that we've enjoyed together. It is called Morning Blessing - Beautiful & Peaceful Start To Your Day. It's short, sweet and to the point. Really helps her start her day on the right foot. Honestly it helps me have a wonderful day as well! If we search for videos with words like "morning guided meditation" or "morning gratitude meditation" we will find several other options.

Bianca literally asks before bedtime that she wants to hear the meditation. She always comments "Mom I'm going to brush my teeth and put cream on my hands and then I'll be ready for my meditation, okay?". Never did I imagine that my 9 year old willing to do something as serene and soothing as meditating. As a parent there are situations that present themselves to us and it's our duty to figure them out - if we can't then we just let it go after a couple of failed attempts to "UNDERSTAND". In this instance meditation has been a God-send for our beautiful butterfly. It has helped get through the grueling process of a nightly routine that's very often filled with pain, blood and tears. While EB continues to try to steal away our happiness we are constantly squashing it like a bug. By keeping Bianca in a somewhat flowing and acceptance state of mind we have been able to conquer the nasty beast that is EB.

Until next time...

Bee completely passed out after a dressing change & her
guided meditation :)

Tucking her in she would not let go of her new friend "Fudge"
she made at her Build-A-Bear party!

EB Awareness Week 2011 ~ Bee’s Hands & Her Capabilities Beyond Our Expectations

Bianca ~ Aug 2011 ~ Almost 9

As many of you know Bianca has a form of EB that is called Recessive Dystrophic Epidermolysis Bullosa (her sub-type was classified as Hallopeau-Siemens – verdict is still out on that one). We’ve gone through several manifestations that come along with her diagnosis. So many things were told to us that we would be dealing with today. By the Grace of God, Jesus Christ and the Holy Spirit we have been able to somewhat live a very active and normally modified life! She plays like any 9 year old ~ swims, dances, sings, draws, skips, hops, colors, plays – you name it she’ll try it at least once!

One of these manifestations that we’ve known since day one that is inevitable is the continuous scarring, constricting and webbing of her hands. While wrapping them periodically and placing special bandages and primary dressing we have been able to somewhat “delay” the webbing process. A known fact is that her dominating hand – the right one – seems to be affected much more than her left hand. Her fingers have curled in and we’re having issues with her flexibility. However, through the years and the advice of many others out there that have been dealing with EB (specifically her type) we have come to understand that there are a few simple steps that can help the process of gaining some additional movement in the fingers that have curled in. One is after a LONG bath stretch those fingers out one-by-one for a few minutes every night. Between the warm waters and the soaking the skin loosens up a bit. Then there’s the wrapping in between the webbing space to create some form of suspension bandaging – overnight you can see the separation (and sometimes a bit irritated) that is created with the wrappings. This has helped in the webbing department – again not to completely do away with it but as most EB moms know delay it. Another “by chance” that I ran into through the years was the use of an all natural “sugar-scrub” that has helped in gently exfoliating the dry skin followed by the amazing Mary Kay Extra Emollient Night Cream. This nightly routine (scrub is used only 3Xs per week) has helped Bee’s hands look smoother and more toned than ever. All by pure luck – a mother’s sixth sense!

With all that goes on with Bianca’s hands I can tell you right now that she draws BEAUTIFULLY – her imagination is so vividly active that it allows her to use her hands in the same way that you and I can – no matter the restrictions that have been put upon them. She handles the remote like a true master – just like daddy. She has done dishes – only when she’s trying to be extra good to earn things and can wash her face. She can hold a rag in the tub while she takes care of getting herself all nice and clean. She can catch a ball and has a mean right-handed throw! She can grab her toothbrush to brush her teeth. Put on her school uniform in the morning and slip on her PJs at night! She is an amazing little girl regardless of all that has been placed upon her – I believe it has made her into this tough little spark!

Until next time…

Bianca's Right Hand - Webbing between the middle & index
She also did not have any skin on the top of this hand @ birth

Bianca's Left Hand - more flexible more plumply :) - had little to
no trauma @ birth



Bianca's palms ~ again you can tell the difference between her
right and left hand.