Tuesday, January 18, 2011
The Vest Chest Clearing System
Please help save my left lung! The Vest Chest Clearing System.
A medical update is long overdue and I apologize for not updating Brianna’s blog but there has been too many things happening. Unfortunately, and I am saddened to say there is more bad than good that has been going on. I will share the good since that is the shorter part, we moved to our own apartment just my husband, Hailey, Brianna and I. We have been extremely happy to finally have our own space, just the four of us. Unfortunately I wish that the happiness would have lasted a lot longer. Come December, Brianna begun to get sick again (she had been well since March 2010 even managed to stay away from hospitals and ER visits) she started a cough and began having trouble breathing again. We visited her pediatrician who dismissed it as a cold. After a few days she came down with a sudden fever of over 102.6*F so we rushed her to the emergency room at CHOC Children’s Hospital of Orange County. They immediately ran some X-Rays and ordered some nebulizer/breathing treatments while we waited for the results. After hours of waiting, our nightmare was confirmed… she had pneumonia, again. They told us the left side looked so bad they couldn’t send her home on antibiotics they were going to need to admit her. They immediately started IV fluids and antibiotics in the ER which were continued up on the floor in the hospital. A second X-Ray confirmed that she didn’t only have pneumonia but that she had liquid in sacs outside her left lung and that her left lung seemed to be completely consolidated/collapsed. They immediately sent her for a CTscan to get a clearer picture of her lungs to check if the fluid was enough to were they would have to do surgery on her to drain the fluid or not. The CTscan showed that the fluid was not enough to put her through surgery but it also confirmed our fears that in fact her left lung had completely collapsed again. I say again because her left lung collapsed in March 2010 when she was hit by adenovirus. Her treatment consisted of a 6 day stay at CHOC two types of antibiotics through her IV and a bronchoscopy/laryngoscopy (a scope of her lungs) was performed under local anesthesia to get a sample of what type of pneumonia was occurring in my lungs. They also removed a lot of fluid from her left lung which helped recover approximately 35% of lung capacity on her left side. They tested that the current antibiotics would kill the current pneumonia and the doctors felt confident that after removing so much mucus/fluids from her left lung that she was safe to go home to continue recovering on antibiotics and on her regular breathing treatments as well as with regular CPT (chest percussion therapy, a manual version of what the The Vest Chest Clearing System). Her mood had improved drastically by the time we got to take her back home. From the first few days at the hospital not wanting to sit move nor walk to feeling up to walking and babbling again. Her smile had returned.
The current battle: We took her in to her pulmonary doctors office for her follow up x-ray on January 11, 2011 to find that her left lung has now fully collapsed again. Her doctors are fearing that her left lung may be permanently damaged and that she could permanently loose her left lungs function 100%. We are devastated at this news. With all of Brianna’s pre existing health conditions the thought of her not being strong enough to survive on one lung for long is tragically very realistic. With her aspiration and her reoccurring pneumonias it wouldn’t be long until she caught a respiratory infection or pneumonia again. So her doctors and us, her parents, want to do everything in our hands to help her save her left lung for as long as possible to allow her the chance at a longer life. Her pulmonary as well as pediatric doctors recommended and wrote a prescription for a The Vest Chest Clearing System in hopes that this devise can help her clear her left lung and recuperate as much lung capacity as possible and to help maintain the health of her right lung as long as possible. This vest is a vibrating system that is worn during breathing treatments this loosens up mucus and other fluids in the lungs and helps force a cough making the patient cough out the secretions out of the lung to un plug the lung/s since her system isn’t strong enough to clear it on its own. They also wrote a prescription for a new nebulizer medication that would help loosen up the mucus so that the vest gives the best results. Her doctor warned us before she put in the request for authorization that we will have a very hard time getting this equipment covered since it is so costly. The vest itself is between $25-35,000.00 and the medication is $100 a day. They told us to be prepared to put up a fight and to try to fundraise to raise a % of the cost of the machine and medication so that the insurance will be more intrigued to pay the balance. One of the reasons her pulmonologist said we should be prepared for the insurance to deny it is because she doesn’t have the “typical” diagnosis for a request for this vest being Cystic Fibrosis (which Brianna does not have). Sadly this is how insurance companies work, if the name of the health issues are known they are more expected to cover the equipment being covered. Some very well known conditions are Down Syndrome, Cystic Fibrosis, Autism and a few others… but mention Agenesis of the Corpus Callosum (Brianna’s brain malformation) and few medical professionals that I have encountered actually know what it is and less know how it can affect a child… so if this is what I have encountered in the medical field I can only imagine how much less the insurance companies and the public know about this condition. Her chromosome disorder is also so rare especially combined with her ACC that her chromosome disorder has no name, no syndrome, its just an abnormality… abnormality that has caused her so many difficulties with her health. Weather ACC or her chromosome disorder affects her more over the other we will never know, which is the culprit to her health issues, we will never know as both have history of mild to moderate to severe learing disabilities as an outcome as well as mild to moderate to severe health issues as an outcome. The point being that here we have our precious sunshine baby girl Brianna… 3 years old struggling for survival yet again, and this time the insurance company is the one standing in the middle delaying her from starting the immediate treatment that is her only possibility at saving her left lung. The doctors are saying that the longer we wait to start her treatment the smaller the possibilities will be of saving her left lung. The sooner we start the better chances we have. If it takes to long for insurance to approve the equipment we are risking the possibility of our daughter loosing her left lung permanently which could mean loosing our daughter….
We have decided to start fundraising right away… we aren’t taking our chances and waiting for the 3rd insurance denial or when it is too late to do anything for her anymore. I think we are off to a great start we have raised $2,901.00 in one week of fundraising. We did our first carwash fundraiser this past Sunday 1/16 and raised $1,011.00 there thanks to all of our family and friends that supported us. We are eternally grateful. We are still short from our minimum goal… so we are still looking for ways to fundraise and raise money quick for out daughter. If anyone has any ideas please email me we need all the ideas love and support we can get. My family is putting together a fundraising dance for the first weekend of February and we are putting together a second car wash, my husband also talked to a Kraemer Middle School teacher (my former middle school) thanks to a young cousin of mine who brought it up to his teacher, he is hoping to put together a fundraiser at a local Pizzeria in Fullerton which I will post about when we have more info. We need all the help that we can get, we are trying to get medias attention in hope that other families who are also struggling with getting life saving medical equipment for their children approved know that there is a fight to be fought and for them to keep fighting and not allow insurance companies to win. It bobbles our head how the insurance would even contemplate not covering a life saving devise for a 3 year old girl who has been such a fighter since day one and for anyone for that matter. Brianna has endured surgeries hospitalizations after hospitalizations, pneumonias after pneumonias, respiratory viruses after another and so forth and continues to stay so strong so full of life shes our angel our fighter and we are asking anyone who can help us to please do. I am going to open up a donation account for her in hopes that it circulates the internet to raise funds for her quickly.
Sunday she started a fever which is alarming on top of her current issues with her collapsed left lung. We took her into her peds Monday and antibiotics were prescribed we pray that this helps whatever bacteria is starting in her little body. So far her fever is very hard to control and reduce hopefully the antibiotics start working fast. She had a 6 ½ hour upper GI study today at CHOC as an outpatient to check if her Nissen Fonduplication surgery that she had at 11 months was still in place, it seems to be but found out her digestive system is working very slowly and they may have to prescribe her some meds to help her digestive system work properly as keeping waste in ones system can be dangerous. She was also found anemic so iron supplements were prescribed… we are on call for another CT Scan which means they can call us at any given time any given day (sooner than later) to take her in as an outpatient for an updated CT scan of her lungs to see if she would benefit from having another bronchoscopy/laryngoscopy to remove more mucus/secretions from her left lung if there is any. Please keep our little princess in your thoughts and prayers as well as my older daughter Hailey, my husband and I as we travel this journey with her. God Bless you all. I will try to update more often to keep everyone informed of current fundraising events and her health. Love, Brianna’s mommy Araceli Sandoval