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The Call That Takes Your Breath

Well we got a call from the Doctor today. =(  Rachel has psuedomonas.  I have tears as I write.  I know that there are so very many kiddos that have it and have had it for years (already by her age) but still it feels like a punch in the stomach.  It is that reminder that while she looks so good on the outside, there is this beast silently working to claim her health and eventually her life someday little by little and often times without us even knowing.  It is an awful and heartbreaking realization for me today.  At first I couldn’t help thinking about how she has been so good for so long, then I thought about all of the things that have gone on since her last culture.  She was around a lot of dirt (kiddo tries to dig every time she can-even if she gets in trouble), in a hot tub (with out my knowledge), swimming pools, and just out…enjoying a great summer.  So, of course trying to figure out “where” she got it is pointless.  I know that and yet I have to work really hard to keep from going there mentally.  I spent some time praying for peace and comfort.

My heart is still very heavy and it feels like a cliff in many ways.  I unfortunately know a few things that are hard to handle.  I know that although the antibiotic are necessary and we are ever so grateful for them but they also greatly reduce the bodies ability to fight off other bugs.  Knowing that we have just hit fall…makes me pray hard!

The doctor first asked (my husband, and I am very glad that I didn’t take the call.  I am pretty sure that I would have started crying as soon as I heard his voice.  Doctors only call with bad news.  Our nurses call with normal updates.) how we wanted to handle this.  Option #1 We could go into the hospital for 2 weeks on IV’s.  Option #2 He also gave us the option of doing a very strong oral and the inhaled antibiotic together (side note, why do the “Big Guns” come with a big price?  $5,000 for this one medicine-we should all work in pharmaceuticals =)).  We of course choose the latter.    We agreed that we would start at home.  If this does not eradicate it, we will go to the hospital in a month to do IV’s.  There is a very small window of time in order to keep it from multiplying to the point that you can’t remove it (around 2 months).  If it is not eradicated, it is something that will be fought every other month forever (they give the body a month of rest, and then hit it hard again).  Home is the best environment and the safest if it will do the job.  Rachel cultured PA when she was 2 and we haven’t seen it on a culture until today.  We are praising the Lord for that!  Please pray with us that these extreme drugs will do the same thing for her.  Like I said there are a ton of little and most of the big CFer’s that culture this beast, however, the longer we can delay her lungs having to fight this one, the better.  Psuedomonas is a virulent bacteria that destroys lungs quickly, and on top of that forms a shield to protect itself from being destroyed by antibiotics.  Rachel will start with a big antibiotic tonight and then as soon as the inhaled “big gun” comes in we will start on that.  There was  a bit of a mix up…I wish I would have talked to the doctor in a way.  In order to use the nubulizer that makes this medicine work quicker (20 minutes 2 times a day)  it needs to be reformulated at a specialty pharmacy.  Other wise the normal strength can be used with a different nebulizer.  HOWEVER THAT WOULD TAKE 45-60 min. twice a day in addition to her normal schedule.  UGGG!!!

So, while we wait, we pray.  Both of these antibiotics are really harsh.  The oral makes her feel like she is going to throw up, and reduces her appetite to nothing.  Then the inhaled is really hard on her too.   It makes her feel like she is gagging and can’t breath (pray that it will be easy on her this go round).  Add that to the logistics of adding in more time required of her already tough schedule=(  I wish with every part of my soul and spirit that I could take this disease away from her.  It breaks my heart!  BUT I know that God is good through out all of life’s turns and challenges.  I will rest on the fact that Jesus never fails.  He walks with us!  I am grateful for that today.  Appreciate your prayers.

In His Grace and Truth-

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15 Responses

  1. I’m so sorry Tiffany. I’m praying. Love,Gina

  2. I’m so sorry to read this. We will be praying for each of you in this.

    • Thank you for your prayers. As we read today, Isaiah 58:11 The Lord will guide you continually and satisfy your soul. What a promise to hold onto (for us and for you in the coming days). We are blessed by the love the Lord has shown through His people. Thank you.

  3. Tiffany, you are all in our prayers. Praying for strength and for Rachel to respond quickly to the medications! Praying that they will not be too hard on her. May the Lord carrying you in this veryhttps://heleadsus.wordpress.com/2011/09/12/the-call-that-takes-your-breath/#comment-form-guest difficult time!! Blessings, Sara V

  4. Oh girl – so prayerful!!! Praying for you and your sweet husband to have strength and praying for your kiddos to roll with the punches and for sweet Rachel to respond well to treatments! My kids are praying for her too!!! Please let her know Cerra Cathryn says hello and hopes she feels better! 😉

    • Thank you. I will tell Rachel (although she totally doesn’t understand, and I am glad for that at this moment). Going to be a long month, but we trust in His grace and know that God is more than able! We hold to that promise. Thank you for the prayers.

  5. I’m so sorry. I’ll pray that the medications do their job & Rachel’s body can kick this nasty bacteria. God bless you for your faith & determination!!

  6. Hi Tiffany! Oh, I remember that call so well, and yes it was a tearful one too. This bacteria is definitely scary. Asher cultured for it at about 13 months, and because he was symptomatic that sent us into the hospital for IV’s. We haven’t been back to the hospital, but have been on a 28 day on/28 day off schedule pretty much since then (minus about a year) and he’ll be four next month. If you have any questions about Tobi or Cipro (I’m thinking that’s maybe what you’re on) let me know. I’ll tell you that when he’s on Tobi we give him one Culturelle/probiotic in the morning with breakfast, and one at night, because the drug is pretty harsh on their bellies. Anyways, I’m enjoying catching up with your sweet family, and look forward to following along with you on this life journey. Love, Rachel

    • Rachel, it is so good to connect to another CF mama who knows the struggles. Yes, Rachel is on Cipro and Tobi. Every time she has been on cipro it deals her a fit so we have been doing probiotics, but her system still has major issues with it. The Tobi…ick! She is getting better tolerating it, but there have been a few times that it has really caused her some trouble! We are really hoping to stay out of the hospital, but will go if it is necessary. God knows what we can handle and we trust He will provide all that we need should that be our path.

      Thank you for taking the time to write. Blessings to you and family.
      In His Grace and Strength,
      Tiffany

  7. Rachel, we too understand your plight. My son has been positive for both pseudomonas and cepacia, each. I didn’t know cepacia was such a monster (or what it was, for that matter) until we got that infamous call (and voice mail to return the cal immediately, that’s always wonderful).

    I hope that the past few weeks have flown by and find rest in that you are almost through the first month. We eradicated both of his monsters with lots of prayers and aggressive treatments. I have faith that you, too, will find victory.

    God Bless and many a prayer,
    Hollie
    mother of CF’er, age 9

    • Hollie,
      What an encouragement to hear that you were able to eradicate both PA and cepacia. Cepacia, in particular scares me like crazy! May I ask, were you able to do it from home, or did you have to do the hospital/iv route? Regardless, God is able! I am thankful for that truth. We continue to pray for strength and a gracious hand from the Lord to walk the path that He sets before us, even when it is hard. He is faithful and always good!

      Thank you for taking the time to write. Rachel counted last night to see how many more times she has to do toni…it was really cute. Although she is now used to the smell and doesn’t hardly flinch when we do it. Thankful for that!! (I will have to check out your blog later tonight after all kiddos are asleep.=), I love “meeting” CF families. Especially ones that draw there strength from above!=)

      May God be near,
      Tiffany

      • We did a 21 day stint in the hospital. Heavy on Tobi and IV antibiotics. Afterwards, we went home with another month of Tobi and oral antibiotics. It took a year for them to ‘officially’ clear him of the Cepacia, but they did! It’s amazing how resilient our little angels can be! I have always said that God must give them an extra jar of courage and strength before he sends them to us! God Bless and I will be checking in to keep up with your sweet family!

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