Friday, June 10, 2016

Day 4: 6/9

Thankful Thursday

To begin this post I want to say how thankful I am for my life, family, community, and my God. This life is so much more than I ever could have dreamed of for myself. I feel Gods purpose in my heart each and everyday. I get to witness his love through my child continuously. This life has given me a child whom has stolen my heart and empowered my life. I am so thankful for wonderful family who daily check up on us and keep tabs on our daily life. To others they may appear alittle nutty but to me they are without blemish. They along with friends and strangers help make up a wonderful community who encourages us to keep on going. Who prays for us and is on this journey with us. It is so comforting to know that a whole team is cheering you on. Most of all I am so thankful that my God has laid out this plan for my life. Shew, what a blessing it is to know that someone has a journey laid of for me when I have no clue how to proceed. How safe it feels to know that someone has created a plan that has my best in mind. I am so thankful to my Lord for providing my needs and wants. He has blessed us with hospitals, insurance, doctors, and nurses to aid us physically along with emotionally. Financially CF is expensive but I have never once worried about money over R's care and I am so thankful for that. The Lord has made a way for me and my family and I am daily amazed. I am so thankful for his blessings on me.

Thank you Lord for our life and for R's health. I love this life you have given me. I am beyond blessed.

On to today's itinerary:

Today I received news that provided with a feeling of defeat like no other. News that made me feel as if I had failed as a mother. News that I did not want to hear for a very long time...



News that R had pseudomonas...

For the non cf'ers:

Pseudomonas is a major cause for cf lung infections. 
  • The bacteria thrive in moist environments and equipment, such as humidifiers and catheters in hospital wards, and in kitchens, bathrooms, pools, hot tubs and sinks.
  • Pseudomonas is one of the most common bacteria found in people with CF, occurring in about half of all people with the disease and nearly 70 percent of adults with CF. 
  • Once Pseudomonas is established in the airways, it's very difficult to eradicate. But aggressive treatment can delay the development of chronic infection.
  • The germs spread either by direct contact, such as kissing, or indirectly by touching objects, such as doorknobs or pens, that have been touched by a person infected with the germ
  • infections caused by Pseudomonas aeruginosa persist, and lead to respiratory failure, requiring lung transplantation or causing death of the patients
  • P. aeruginosa is able to survive due to adaptation to the inflammatory defense mechanism to the respiratory and conductive zone of the lungs, and to antibiotic therapy. 
  • Hard to eradicate and prevent
  • Treated by inhaled and oral antibiotics combined.

Watch Me!

Tobi (inhaled antibiotic)
-It can treat lung infections in cystic fibrosis patients when inhaled. It can be used in multiple other forms to treat other types of infections.
- used via nebulizer 
-may cause hearing and balance issues
-used in 28 day cycles 2x daily

Cipro (oral antibiotic)
- at first we believed that we would not be able to use the cipro due to R's allergy to imitation strawberry but after a little trial we learned that he tolerated it okay. Shew!
- we do the cipro by mouth 2.1ml 2x daily for 14 days
-it is very gritty like sand, R is not a fan

So there is a little info on the mean bug called pseudomonas aeruginosa...

Our plan is to do the cipro for 14 days 2x daily. The Tobi 2x daily for 28 days then have a bronch and cultures performed. Hopefully we will have eradicated the pseudomonas, but if we have not we will wait 30 days then do the antibiotic combo again until eradicated. 

When it comes to the parainfluenza 3 there isn't much we can do but aid the symptoms and pray it gets better soon! Parainfluenza 3 is viral and doesn't respond to antibiotics or steroids but does respond to time. It also makes R's body create more mucus and since he has not been drinking well this mucus is very very thick. Therefore  providing the pseudomonas a wonderful little home. So the sooner we kick the parainfluenza respiratory virus the sooner we knock out pseudomonas. 

With cf everything somehow goes hand in hand. When you think your just dealing with a little bug it often turns out to be a bigger monster lurking in the shadows... getting the pseudomonas diagnosis has really impacted me and I feel so defeated. I know somewhere at sometime I missed something and this little bug creeped in. No matter how hard I tried to prevent this it still occurred.  Now R has to suffer due to my mistake. Sometimes it is so hard to be okay with having CF. I know my God has a plan and I never doubt or question him and that gives me peace. I know that this journey is one marked by the good Lord who only has R's best in mind. Thank you Lord for the assurance you provide amiss the storm. 

R doesn't appear to be in any pain or discomfort. He does get tired much easier and his breaths are still forced. The goop in his chest is still present and can sometime be felt rattling post treatments. Lately he has really been into stickers and straws ha. It's the little things in life that can provide such thrill and entertainment. He has done so well here at the hospital and the whole staff has fallen for his charm. I am so thankful to be his mom, he is so strong and full of fight. His desire for life is a daily reminder that he will not let CF dim his flame or extinguish his light.


** I apologize for the differing in font size and layout. I did lots of copying and pasting on behalf of time.**




This war's not what I would have chosen
But you see the future no one knows yet

And you're still good when I can't 
See the working of your hands
You're holding it all





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