Friday, April 17, 2015

My sweet Children

To Kaylee, Lynsey and Jonathan
As I sit here once again waiting for them to perform surgery on my child, I think about my role as a mom. My heart overflows with love, joy and heartbreak to the point I feel like it may explode! Words could never tell you how much love I have for you. 

 Sweet Child of Mine
I know you are so big now. You’re growing up faster than I could have ever imagined. In my mind, you went from 6 months to 16 years in about two weeks. It’s gone by so quickly for me, and even as you wish away your youth in exchange for budding independence, I can still see you as a baby in my arms. Oh it was not so long ago I would rock you to sleep. And now, the nights where we will be under the same roof are quickly slipping away. Dear God, how did that happen so fast?
But so many times, what I want to say to you in the heat of our “discussions”  is not what comes out. In my fear for your safety, for protecting you from every hurt I endured, every pain I see you walking straight toward, I come across as angry.
It seems to you that I just don’t understand.
Sweetheart, nothing could be further from the truth. I do understand. I understand completely.And what you need to understand is that my first job as a parent is not to win a popularity contestit is to protect you. I am here to first stand guard. To keep you safe—from even yourself if necessary. If that makes me unpopular with you or your friends, oh well. Such is the price of being right. And I am willing to pay it.
Second, my job is to lead you. In this phase of your life, you may think you understand everything and everyone—but let me assure you—you do not. I see things you are blind to. I sense things you are clueless about. Dear sweet child, you must trust me. How many times have I been wrong before? I have nothing but your best interest at heart. So if I am leading you away from something or someone, you can trust that it is not because I am trying to ruin your life, but to save it.   And raise you the way I feel God intends me too..... With ultimate, unconditional love and sacrifice. I parent you the way he parents me, hoping one day you will love him just as much as he and I love you and he did die for you!!!!
Last, please remember this. There is no one else, not a single living soul on this earth, that loves you as much as I do. You shared my heartbeat. I’d do anything for you. I would give my life in exchange for yours any day of the week. If a doctor said you needed my heart to survive, I’d gladly give it. It’s with every cell of my being that I ask you to remember this when we argue. When you think I’m wrong. Or mean. Or stupid. Or that I don’t care or love you. I want you to know I’d give my last breath for you.
So don’t think for a minute that I’ll give up fighting the good fight. I win, because I love you. I fight because I’m fighting for what’s best for you. And I love you so fiercely that it’s crazy.
I love you my sweet child.
I LOVE LOVE LOVE LOVE you, 
Mom

Thursday, April 9, 2015

Daily struggles of fighting CF

Why are CFers so tough.... Could you handle this daily schedule, plus school, homework, extra curricular activities!? 
Not to mention hours of surgeries, and months in the hospital a year! And I have two with this disease...... WE NEED A CURE, not more medicine!!

Daily medications:
Inhaled:
Dueoneb 4xday ( 9/1/5/9)
Pulmozyme 2xday with PEP (1pm/9pm)
Hypertonic saline 3x day (9am/1pm/5pm)
Tobramyacin 28mgx4 2xday( 8 pills day)
Advair 115/21 2xday
Cayston 75mg 3xday
Vancomycin 500mg 2xday
Dulera 2x day

Vest 3-4 xday ( 1pm/5pm/9pm) 40 min each 
Acapella 2x day (9am/9pm)

Po meds:
Bactrim 800/160mg 2xday
Prednisone 60 mg 2xday
Keflex 250mg 4x day
Viokase 20,000 units 12pills a day
Singulair
Bisacodyl once day
Loratdine
Ibuprofen 600mg
Sertraline 25mg
Vitamin D 1000u twice day
Adek vitamins 4 pills day
Benadryl 25mg 4 xday before 
Zenpep enzymes 6 tabs with all meals and snacks and tube feeds(30/day)
Flonase 2xday
Saline rinses 3-4xday
Bactroban with Pulmozyme and acetic acid solution
Miralax 2xday
Colace 1xday
Ondansteton 4 mg
Cyproheptadine 4mg 2/day
Tylenol with codeine every 4 hours pain

Feedings:
Two cal HN 5 can night
Pediasure w Fiber 5 cans night
2500-3000 calories day... More when sick

Glucose checks:
Morning, after meals, midnight thru Feedings.

Iv medications:
Vancomycin 2/day
Cefepime 3/day
Tobramycin
Linazolide every 6 hours

106 meds day, 9 hours IV meds, 8-9 hours Feedings at night, 2 hours of airway clearance, plus 2 hours of treatments. 

This picture shows only two weeks worth of meds!!!