Part 5 of todays post, more videos of 3 years ago today.

My sweet chubby girl, I had forgotten how hard we worked for her to hold her hands flat she would keep her hands in a fist all the time and therefore didnt have a grip she would grab her toys with her fists :P I cant say time has flown and I cant say its gone by slow... steady.... with lots of ups and lots of downs. My poor baby.

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