Tuesday, July 28, 2015

Day 13 (7-27)

Cystic fibrosis is not a well known disease with the general public or among general pediatric nurses. [Referring to 98% of the nurses we have had]
While we have been here we have told our story multiple times and been teachers of cf along the way. Below are a few examples of things we hear or are asked everyday:

  • How did Roanan get CF?
  • Are you and your husband both carriers?
  • When was he diagnosed?
  • How was he diagnosed?
  • I'm so sorry...
  • Did you give him enzymes at the delegated times?
  • Did you do the vest?
  • I have a kid with asthma, I completely understand what you go through.
  • My child was premature and had lung issues as a child as well.
  • Are you sure he can eat butter?
  • Did you remember to give him his vitamins and Ranitidine?
  • Have you heard about all the new cures for cf?
  • Do you feel comfortable doing his breathing treatments?
& the most impactful:

He is the youngest child with cystic fibrosis that I have seen doing the vest,


the youngest child I've seen in for a tune-up...

Dont get me wrong, everyone here is wonderful and they absorb the information I say as much as they can. But it is still annoying when someone taking care of you doesn't get it... It's aggravating to explain how cf occurs to a nurse... It's so difficult to be kind when people ask dumb questions on day 13. It's very insulting when you are asked if you remembered to feed your child or change his diaper... It's hard to not get smart with people who ask questions that you have been asked literally everyday since you arrived... It's an odd feeling when people compare your child journey to theirs. Majority of the kids here are here for an acute illness. They may be here for a few days then be good to go. No strings attached when they get discharged. For children with a chronic illness strings are always attached. They don't get to leave the hospital and leave all their medicines there to. When kids with a chronic illness leave the hospital they are usually sent home with more than they came with. They stay for lengthy periods of time numerous weeks throughout their lives. & it's frightening to hear that your child is the youngest they have ever seen in for a tune-up. 

But the carousel continues to turn.

If you don't jump on you'll get left. You keep going. You answer the day questions everyday. You make the same statements everyday and you do it all with a smile and kindness in your tone. You suck it up and go on. You pity those who want pity and you appreciate those who send you empathy. Those who try to understand and genuinely want to join your journey. Those you cherish and appreciate. You pray for all the children here and for all those who will come in the future. You pray for the staff. And you pray without ceasing for your child (and your sanity). Hospital life is such a blessing but it is also mentally draining. I praise God for blessing us with this place and for everyone that we have met. I am so blessed to get to share Roanans story with so many people. I am honored to share information about CF so that CF families in the future will have a more informative nursing staff. More people educated on CF = better care = healthier cf'ers.

The doctors have no changes. Everything looks great!
Today was our last day on steroids and Azithromycin.
Roanan currently has alittle yeast diaper rash we started clotrimazole ointment 3x daily.
We have moved up to size 3 diapers.
Roanan loves his carrots and eats those with addition to his 3 bowls of suped up oatmeal.
He was kinda puky today, weird.
He coughed 2x
Physical therapy said R was perfect perfect!
Changed IV tubing
Line filled with blood, flushed it out. No worries!
Day 13/21

12 ounces milk
3 ounces fortified milk
8 tablespoons oats
3 teaspoons butter
3.2 ounces applesauce
2.5 ounces carrots
2.5 ounces prunes
1 teaspoon sugar

9 Creon 6,000 capsules
4ml Ranitidine
.5 aquadex
Azithromycin 3.5
1/3 bag fluids


98.7 temp
96 Oxygen saturation

98.2 temp
100 Oxygen saturation
123 pulse

99.2 temp
100 Oxygen saturation
126/68 BP

Thank you God for this life. Thank you for my child and for all those helping us on our journey. I pray that you will bless everyone here and provide them with comfort. Thank you for insurance and for this medical staff. Thank you for Roanans health along with my own. Thank you for blessing me with this life. 

Thank you Jesus for giving your life for mine...

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