Friday, January 21, 2011
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.
Brianna has so much going on that throwing a diagnose of Cystic Fibrosis on top of it all would be plain DEVASTATING.
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.
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
This just cannot be happening, even the possibility is petrifying enough. NO I cannot accept it.
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.
PLEASE. GOD. PLEASE.
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