3 WEEK HOSPITAL STAY, starting TODAY :( n

Hospitalized for 3 weeks, starting NOW! :/

Sooooo…… last night I went out and bought the Ivory soap and pedialyte to prepare Brianna for her SWEAT test to test for Cystic Fibrosis (they told me I could only bathe her with that and to make sure she was well hydrated). I bought her some really cute Mickey and Minnie Pj’s and went home to get her ready for her test the following morning (today).

Bathing her was a disaster, it turned out to be a sink bath instead of a bathtub bath but we got that out of the way I changed her into her new Pjs so she would be ready to go in the morning after a diapy change (diaper change). So far so good, right…. So we think.

She falls asleep immediately, awesome. Perfect. She will be well rested for tomorrows BIG day… little did we know how big of a day this was going to turn out to be.

This morning I got up to get Hailey ready for school, got Bri ready for the test and when my husband went to take Hailey to school I got ready… as soon as I got out of the shower my cell phone rings, the caller ID reads “Childrens Hospital”…..

My heart sinks.

Its Dr. Moser, Briannas pulmonary, she is calling to discuss the CTscan that Brianna had on Monday. She said her lung shows “soooome improvement” YAY happy news right?... well then she proceeds to say that she isn’t comfortable having her out of the hospital… thump thump thump my heart is pounding like crazy now…. She proceeds to say that she wants to go “all in” NOW and give her lung some tough love… NOW. She tells me she wants to admit her for 3 weeks! Yes you read that right for 3 weeks. She asked if Bri had her vest yet I said no, because the insurance hasn’t approved it yet and we don’t have enough raised to make a decent offer yet and then she asked if Bri started her pulmozyme (the $100 a day med) I said no because medical denied it…. She said that gave her ALL that much more reasons to want to admit her “TODAY”….

She said she will put her on IV antibiotics for 3 weeks…. OMG my poor baby is going to have an IV for 3 WHOLE WEEKS and I KNOW this wont be ONE poke with ONE IV for the 3 weeks NOPE. IT WILL require many many pokes and many IV changes with more pokes that’s not including the blood work draws they will be doing during these three weeks. SHOOT!

She said she needs to perform a bronchoscopy under anesthesia to suction her left lung. Sigh.

She said she will be doing chest x-rays every 4th day. Sigh.

She said they will most likely take out her tonsils and adenoids during this stay. Sigh.

The bright side (if you can call it that) is that she will begin her VEST treatments in the hospital within the next few days if not tonight using one of the hospital treatment vests and they will be done with a professional respiratory therapist. She will also start her pulmozyme in the hospital since the stupid insurance denied it. So in that sense sure it’s a “good thing”.

Yet is having to hospitalize my baby for three freaking weeks because the insurance didn’t cover her medical equipment soon enough “convenient” or “any better” HELL NO.

Ideally and how it was originally planned we were doing everything outpatient until she had to have a bronchoscopy which would have been one day stay and her tonsiladenoidectomy which would have been a 2 day stay… the insurance was supposed to cover her equipment and medicine ASAP and keep my baby at home DAMN IT. Not have my in a hospital room in a hospital crib for three entire weeks no no no hooked up to an IV for three weeks in a row no no no no no no no. NO. I was supposed to keep working and going home to my babies. Not taking my oldest to school going to work picking her up during my lunch taking her to be taken care of, back to work, after work to the hospital break the husband get no sleep and the next morning do it all over again… NO NO NO NO. STUPID insurance this isn’t how it was supposed to be we were supposed to do it all as out patient and because you are useless morons now my daughter will be condemned to a stupid hospital bed for 3 entire weeks…

Stupid stupid stupid insurance. This hospitalization and in patient treatments will cost you 10,000 times more than it would have cost you to cover the stupid VEST and the meds !

Sigh.

Well 3 weeks of crazy hectic psychotic depressing hell begins, now. :/

Oh and gee I cannot wait for the SWEAT test results tomorrow… can we catch a break? God can we get negative results on the Cystic Fibrosis so that we may see a ray of sunlight in this darkness? Please?

A very worried, very scasred, very sad, very depressed and lost mommy.

Araceli

We raised $730 at I GOT CHA PIZZA we are that much closer to our goal to meet Bris current medical needs.

We raised $730 at I GOT CHA PIZZA

Yesterdays fundraiser went well! Thanks again I Got Cha Pizza, Wiley, Mary Kay, and Diego and I Got Cha Pizza employees! Thank you to our friends, family, and the community who came out to support our daughter in her struggle to save her lung. THANK YOU from the deepest of our hearts, we are humbled to have people like you in our lives.

It was busier than I expected it to be, and I believe busier than I Got Cha Pizza thought it would be. It was great seeing a lot of people there that truly I didn’t expect.


We got to show off our PURPLE shirts for Bri! Yay! It was so busy I didn’t catch a lot of pictures, I have posted the ones off my phone which is just of us four and still need to down load the ones in the camera to post them, I got some group shots on those.



Tomorrow is a BIG day. Brianna gets tested for Cystic Fibrosis . SWEAT test. I am dreeeeeeeeeeeeeeeeeeeeeeading tomorrow. I hate that I have to work and my husband has to go through such difficult testing with her alone. Not that it’s a difficult procedure its just not the easiest test to exect bad news from. Its not a CBC it “could” be life altering. Literally. I have been acting like I am stronger than I am but I am not. The smile that I give everyone is fake. Entirely. Every time I am asked how I am doing and I say I am okay. I am lying. Completely. I am NOT okay… not even a little bit.


One day at a time. …right…?

Sigh.



Will update more tomorrow.



Love,

Araceli, Angel Rafael, Hailey and Brianna.




<3 LOVE MY GIRLS <3

Lil Update :/ TODAY IS EXCITING the week not so much!

Here is a short update.
(lets see my definition of short)...

Sunday we did a second donation car wash for Brianna to raise $ for her The Vest Chest Clearing System and Pulmozyme nebulizer treatments... SURPRISE NBC Universal sent out two reporters to broadcast us on the news! They showed Briannas story on KTLA 5 that night and on KWHY-22 and Telemundo 52 ! One in English and two in Spanish! You can view them on my facebook! Look for me under araceli.sandoval4@gmail.com

Brianna had her follow up CTscan of her chest last night at the St Joseph's Out Patient Pavillion. First I must mention the tech was super nice to Brianna and extra gentle! We were in and out within 45 minutes (from check in, to waiting, to CT scan to the car)Brianna behaved very bravely and did SO good I was proud of her she was given a plush beanie baby as a reward. As for the results we should have them by Wednesday 1/26/11 (sooooo nerve wrecking, stomach churning to wait)... depending on the results of the CT scan we will either move forward with a second bronchoscopy to suction secretions/fluid from her left lung. I am hoping she is improving, regardless if she still needs the bronchoscopy or not I hope it shows improvement and not the same or worse to the 1/11/11 test ... the bronchoscopy is scary because they use local anesthesia but she did really good with her last one and it helped her SO much, that it doesnt scary me all that much.

Yesterday we received our first official denail from medical and ccs for coverage to her pulmozyme med ($100 a day medication) because its typically prescribed for children with Cystic Fibrosis but as far as we are aware Bri doesnt have CF, though she is having a SWEAT test done this Thursday to test for Cystic Fibrosis.... which I am praying to God that it comes out NEGATIVE she really does NOT need an additional diagnosis. Especially such a diagnosis.

TODAY however is an exciting day! We are having a fundraising event tonight in Down Town Fullerton at " I Got Cha Pizza " 20% of sales will be donated to Briannas fundraising! YAI ( A special thanks to the owner Wiley Randolph, his sister and his sisters bf Diego for helping us put this together ). The news may be out again to do a follow up story on Bris fundraising I hope they do come out.

We will all be wearing PURPLE today to show support for Brianna and for celebration of her life and life in general.

I will have to post pictures soon after. I Have lost count of how much we have fundraised but I believe we are at around $3,800 :) and still have the Pizza event and a Dance comming up! YAY Thanks everyone for the love and support.

Since Bri was having her CT Scan yesterday I took the day off and it was perfect timing as Hailey was being awarded for Accelerated Reader and Excellence in Math in her Kindergarten assembly. I enjoyed the extra day with my family. Planning for today and making purple HOPE FOR BRIANNA shirts :)


Brianna hasnt had a fever for a few days now THANK GOD, shes coughing a lot of flemy mucus in the day which I am hoping it means shes clearing out her lung shes sleeping through the night and rarely coughing at nights.

Will update again as soon as I have anything else to report.

Thank you for the continuing love and support.

Love,

Araceli, Angel, Hailey, and Brianna

Cystic Fibrosis?????????????????????????

We received a call today from Briannas new pulmonary office, they want to perform a "sweat" test on Brianna asap. What the heck is sweat test? A test to test for Cystic Fibrosis.

God.
NO.
PLEASE.

Brianna has so much going on that throwing a diagnose of Cystic Fibrosis on top of it all would be plain DEVASTATING.

GOD.
PLEASE.
NO.

I am in a daze I dont understand... she had genetic testing along with her daddy and I when she was 5 months old wouldnt they have tested for CF then?

I guess not huh.

Her doctor says she is presenting a lot of similar lung problems as CF patients do around 3 years of age whom are SEVERELY AFFECTED... God I can barely swallow typing that.

She has been through too much it just wouldnt be fair to throw CF on top of it all it just wouldnt.

NO.
God.
PLEASE.

I have always blamed all her health issues including her respiratory/lung problems (respiratory infections, viruses, pneumonias) all to her ACC outcome and Chromosome Disorder (translocation and deletion on 3&4) never thought that there could be something

more.

sigh.

deep breath.

This just cannot be happening, even the possibility is petrifying enough. NO I cannot accept it.

What now?

Waiting. Waiting. Waiting.

She will have her sweat test to check for Cystic Fibrosis on Thursday, January 27th.

The results will come January 28th.

Exactly one week from today.

Deep breath. Deep breath.

God God God God God God please please please I am begging you for this test to come out negative she doesnt need CF on top of all she has going on God please please please please please please please please please please please please please please please please God please please please please please please NO CYSTIC FIBROSIS PLEASE NO NO NO NO!

I am praying that this is just a 'rule OUT' test requested because we changed pulmonaries (same office so they have her chart and history) but hoping the last one just wasnt as great or proactive as this one and thats the only reason this one wants to test for it, not because she actually thinks she has it.

Dear Lord please help my baby. PLEASE I pray to you that my baby does not have Cystic Fibrosis she has enough going on with her Agenesis of the Corpus Callosum, her chromosome disorder, her collapsed lung and all her other current issues please God.

NO.
Cystic Fibrosis.
NO.

PLEASE. GOD. PLEASE.

NO!

This monday Brianna will have a CTScan of her chest without contrast to see if her lungs are improving or worsening and this will determine the need for a bronchoscopy/laryngoscopy to remove secretions from her left lung. She will most likely require this if her lung is still 100% consolidated with mucus.

I called to see if her prescription for Pulmozyme had been approved and it has not yet because its over 1,000 a months supply this med will help thin out the mucus so that when she does get her The Vest chest clearing system she can cough out the mucus in her lungs easier.

on the slightly "brighter side" Briannas fevers have seized shes been fever free for over 48 hours, she has pooped, she is in a slightly better mood. We are giving her some pedialyte and pediasure now not just pedialyte we started her iron finally for her anemia (iron deficiancy)....

She slept through the night last night finally.

Shes coughing a lot more... I dont know if thats a good or bad thing. I hope it means good that shes clearing out her lung.





We started doing a mannual vibrator on her back for her left lung along with continuing the CPT during breathing treaetments and she is finally allowing us to put the vibrator directly on her back.

I have FAITH.

I have HOPE.

I believe in GOD.

I believe my daughter will come out of this.

We love our daughter and will do whatever it takes to get her through this, she is a fighter, she will survive. She will, God is with us I know it I feel it.

My daughter is bringing strangers together, she is receiving love from strangers, she is getting prayers from strangers... there is nothing that God loves more than seeing others praying for others and loving on one another. I believe God will see her through this. My daughter is brining my family together from every end... from my moms side, my dads side, my dads side other families etc. She is bringing our neighbors together, she is bringing teachers, friends aquantances together... complete strangers together in prayer and in love for her.

She WILL make it I can feel it. She is a fighter. She WILL survive.

Love, a staying strong for her baby Mom

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