Elevated White Count...

I need all my prayer warriors!!!!! 

I was looking forward to calling UNC today with an update on Lexi's cough.  It seemed over the weekend to get a little better...only to have another concern to arise.

 I draw Lexi's blood once a week to keep a check on her platelets (part of the blood that aids in clotting).  The Zyvox that they put her on 3 weeks ago can lower these cells and we had to make sure Lexi's count stayed at a safe level.  Last week they were a little low, but nothing to be alarmed about.  We just watch Lexi close to make sure she didn't have any signs of internal bleeding and didn't let her play too rough for fear of an injury that couldn't heal.  When a blood count is checked it includes a white cell count as well.  This is the cell in the body that comes running when there is infection.  It was a little high last week at 11.1...this week it is over 15!!!!!  Not good.  Her normal count is 8 or 9, so this is double what it normally is.  They were not concerned last week, but really concerned now.  Especially because she should be getting better.  This is her last week of antibiotics. 

So off to UNC we go tomorrow to see what is going on.  Not sure what they will do yet...but those of you in health care know, it is hard to diagnose anything over the phone:)

Please pray that they find out what is going on so that my sweet angel can go back to not having a daily cough at ALL!  With all that they have treated her with over the last few months, my fear is that we will have to do IV therapy.  I do not want to spend Christmas in the hospital!!! 

Love you all, and am so very thankful for everyone that follows my post...join, so I know who you are:)

Did you know...Third Hand Smoke

What is third-hand smoke, and why is it a concern?

Answer

from Lowell Dale, M.D.

Third-hand smoke is generally considered to be residual nicotine and other chemicals left on a variety of indoor surfaces by tobacco smoke. This residue is thought to react with common indoor pollutants to create a toxic mix. This toxic mix of third-hand smoke contains cancer-causing substances, posing a potential health hazard to nonsmokers who are exposed to it, especially children.
Studies show that third-hand smoke clings to hair, skin, clothes, furniture, drapes, walls, bedding, carpets, dust, vehicles and other surfaces, even long after smoking has stopped. Infants, children and nonsmoking adults may be at risk of tobacco-related health problems when they inhale, ingest or touch substances containing third-hand smoke. Third-hand smoke is a relatively new concept, and researchers are still studying its possible dangers.
Third-hand smoke residue builds up on surfaces over time and resists normal cleaning. Third-hand smoke can't be eliminated by airing out rooms, opening windows, using fans or air conditioners, or confining smoking to only certain areas of a home. Third-hand smoke remains long after smoking has stopped. In contrast, second-hand smoke is the smoke and other airborne products that come from being close to burning tobacco products, such as cigarettes.
The only way to protect nonsmokers from third-hand smoke is to create a smoke-free environment, whether that's your private home or vehicle, or in public places, such as hotels and restaurants.

Article from: The Mayo Clinic

Had another first tonight...

I am such a planner, always have been.  I am not much for surprises of any kind...good or bad.  Maybe it is a control thing or maybe I just don't like the attention unexpected things bring.  I am a routine type of gal.  Thank God, Reed keeps me out of my rut..always in a good way:)

On the other hand, mother hood has brought about so many challenges that I never expected I could do or would have to do.  Sleepless nights, nursing, diaper changes, cleaning up poop, pee, and vomit.  Never with a pause or second thought.

CF, however has brought about so many things that Reed and I never imagined we would have to do.  Feeding tubes, IV lines,  oxygen lines, emptying and changing ostomy bags, giving shots, sterile dressing changes, grueling medication schedules, and isolating Lexi from things/people that can't or won't do what it takes to keep her healthy.  All of these things have been so hard, but God has kept us strong.  At the end of the day, you look back and wonder how in the world you managed.  You just do what you have to do...I guess.  Be smart about stuff first and let your heart and emotions always follow second.

Just when you think there can not possibly be anything new you will have to do...that day comes.  Today is that day.  I, for the first time, had to draw Lexi's blood.  I don't know who was more nervous, me or Lexi.  I don't know who was more upset as it was being done me, Reed, Lexi, or Gage.

Thank God it is over!  At least until next week.  Lexi has to have her blood count checked once a week while she is on these new antibiotics.  Shewwww, I hope next week is easier.  Prayers for us all, please.

A Different Approach...

So...Lexi did not have an intestinal infection!  Thank you Lord!!!!!  They have started her on two antibiotics that she has never been on before; Refampin and Zyvox.  These are usually used to treat staph....so we are hoping it will attack her ORSA.  The side effects and schedule are grueling...more so than most antibiotics.  The Refamin is taken twice a day but has to either be 1 hour prior to a meal, or 2-3 hours right after a meal.  Those of you that know my Lexi...well, she eats all day long.  So I am trying to give her one dose at about 4am, so that on school mornings she can keep her schedule of breakfast and breathing treatments.  She just goes right back to sleep, but not Mom/Dad:)  The Zyvox is every eight hours, so one dose of this is given around 11-12 at night.  Another during the night dose...wish it could be at the same time as her Refampin!!!  Anyway, with the Zyvox there is 2 pages of food she can not eat, it can make your blood pressure high, and she has to have her blood drawn every week while taking this med.  So please pray that the grueling schedule and side effects will not matter, b/c at the end her ORSA will be gone!

Miley helps fight for a cure...

http://youtu.be/EYNv_yUUA68

Kalydeco to come in 2012!

This is the first of its kind for CF drugs.  It has been said it is like the discovery of insulin for Diabetics.  It will not cure CF, but will make life a lot healthier.  It will hopefully be passed by the FDA in the next 6 months.  This drug is only for about 4% of the CF population.  It is not for Lexi's mutation, but definitely a step in the right direction...right:)

Kalydeco and hopefully the other drugs to follow will be meds that CF patients will have to take daily.  It is not like chemo, or antibiotics in that you take a course and things are fixed.  This med will cost patients approximately $200,000 per year, but I am sure insurance will help pay for part of that estimate.  Patients will still have to do breathing treatments, take enzymes, and do all the other things that keep these patients healthy.  Kalydeco will help correct the defective sodium/chloride channel at the cellular level. 

I spoke to a patient online that has been part of the study trial for this drug.  He is doing great.  He has not been sick at all since starting the drug.  He has gained weight and his lung function has increased for 60-80%. 

What we all need to keep in mind is the health of these patients until this drug is approved and all patients get it.  Patients with certain bacteria in their lungs will not be approved for this drug.  Also any lung or other organ damage done by CF prior to starting this med can not be reversed.  So we must keep at it...keep healthy, keep taking our meds, keep exercising...but most of all keep PRAYING!!!

http://www.cff.org/aboutCFFoundation/NewsEvents/11-2-NEJM-Features-Kalydeco-Study.cfm