Wednesday, June 23, 2010

Are You There God, It's Me Tiffany

Remember the book "Are You There God, It's Me Margaret"? It was a huge phenomenon when I was in middle school to read the book by Judy Blume that followed twelve-year-old Margaret and all her minuscule problems. Today I feel like Margaret. ARE you there God? Between Cooper's three week span of hospital stays, adjusting to all the new medications, and me having mastitis last week I thought I'd seen it all. Last Thursday, Cayden and Trinity's sputum cultures from last week's clinic proved otherwise. Let me start with updates from clinic.

Trinity-gained just over a pound (we'll continue to give her Scandishakes before bed and increase to 3 enzymes before meals and snacks).

Cayden-barely gained any weight. Our dietitian would like us to increase his calories as well since he's on a new enzyme. Cayden's also old enough now to start PFTs (pulmonary function tests) which measure the amount of air exhaled from full inhalation to full expiration (empty). The pulmonary doctors will be able to use these numbers to compare Cayden's to normal numbers for someone his age, height, etc. to determine the health of his lungs. He will continue to do PFTs for the rest of his life.

Back in December Cayden grew MRSA- Methicillin-resistant Staphylococcus aureus- an infection caused by a strain of staph bacteria that's become resistant to the antibiotics commonly used to treat ordinary staph infections.
This month Cayden grew it again and so did Trinity. Protocol for eradicating MRSA includes very high doses of antibiotics both oral and nasal. Some people that grow MRSA once will never get rid of it. Others may. With Trin's recent sputum culture suggesting that the MRSA is active and has more than likely spread from her older brother Dr. Green would like us to try a more proactive approach for the next 3 weeks.

The eradictation process is as follows (this is an exact copy of the email I received from the kids' clinic):

Both Cayden and Trinity now have MRSA by cough throat swab. I conferred
with Dr. Rock and Dr. Conway and later with mom. We will attempt to
eradicate the MRSA in both children and to try to eradicate carriage in the

For Cayden:

1. Bactrim: 2 SS tabs by mouth twice daily for 28 days
2. Rifampin 1 300 mg cap by mouth daily for 28 days
3. Mucopirocin 1/2g or 1/2 of a 1 g tube into each nostril twice a day for
5 days
4. Chlorhexidine bath daily for 5 days and then weekly for the next 3
5. Keep the mucopirocin and chlorhexidine out of the eyes.
6. CBC, AST and Cr (blood work) after 2-3 weeks of treatment by Laura Runte or Dr. Kazi
7. Repeat culture in 2-4 weeks after finishing treatment
8. Wipe surfaces that may be contaminated from coughing or nasal mucus at
home with a household disinfectant such as Lysol or
a bleach solution (1 cup of bleach diluted with 9 cups of water) and
let dry.
9. Towels, sheets, and pillow cases or other items that may be contaminated
by respiratory secretions should be washed in hot water and dried on the
hot cycle.

For Trinity:

The same as above except the antibiotic doses differ:

1. Bactrim 15 mL per dose by mouth twice a day
2. Rifampin 4 mL of the 50 mg/mL solution once a day

For Mom, Dad, Colin, and Cooper:

The mucopirocin nasal treatments and Chlorhexidine baths as above but not
oral antibiotics.

Does your head hurt reading this? Yeah, mine too! We started treatment today and things went fairly smooth. 4 more to go! But really God, are you there is still in the back of my mind. I feel so abandoned. Why one more thing...why now? So I'll do my best. I washed all the bedding today and bleached every hard surface in the house, Lysoled the toys. Now, I just need to "treat" myself to a nice, warm chlorhexidine bath!


  1. Ugh...Tiff!

    He hears you...but just incase, I'll pray a little louder tonight :/

  2. My head and heart just ache for you right now, Tiffany! I can't even begin to imagine how you and Chris handle it all...and every single time I see you around school, you have a smile on your face and a positive message to share. How do you do it? But I know you have your moments, as you do right now. I, too, have questioned if He is there...and I AM Margaret!!
    (Well, Margarete, but close enough!!) It has always been during those times of despair that I have to work harder to find God. And when I least expect it, I do. "This Too Shall Pass" has been my litany for many years...a day, a moment at a time. I wish you the hope of a better tomorrow! God bless you and your family!!

  3. You are not abandoned! He and the rest of his children are here with you. I admire your strength and faith for carrying the cross that he gave you.