Thank you God! Ayden Pulmonist emailed me good news.

Blood results are in: NO Cystic Fibrosis!!!!

I will copy what she wrote instead of me trying to summarize it…

His complete blood count showed a normal white blood cell count and no anemia. His immunoglobulins (antibodies) are also within normal limits. One type of immunoglobulin (IgG) was high, but when we worry about an immunodeficiency, a higher number is more reassuring. Sometimes the IgG is high during active inflammation/infection, and he’s always sick. His IgE was low, and that’s not a bad thing – IgE is usually high in allergy and asthma. So that’s the one immunoglobulin that we don’t mind being low. The others were in the normal ranges.

Ayden's CF DNA testing was negative. I spoke with our CF center director and she feels that with a negative sweat chloride test and negative CF DNA testing, we can feel comfortable that he does not have CF. There have been some rare patients who have grown Pseudomonas and have none of the mentioned medical problems (CF, PCD, immunodeficiency, lung disease). We just treat the Pseudomonas. I will continue to treat his symptoms and the bacteria from his bronchoalveolar lavage.

I feel confident that he does not have CF. His screening immunoglobulins look good. There are many other tests we could do, but I would like to see if he gets better before running up your medical bill.

Now we have an ENT for Aug 19. We still need to find out why his sleep study showed sleep apnea. His adnoids and tonsils are normal size AND doesn't snore. I read this is called Central Sleep Apnea.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004404/

Always something!

Elyse had her 6 month followup with her eye doctor.  Everything had been going great.  Since we started seeing this doctor, Elyse's vision had improved.  NOW all of a sudden, her vision changed.  In six months, the vision in her right eye has gotten very bad.  So bad, that she couldn't distinguish the picture at all.  The doctor is very concern.  Her first thought was that it was neurological, but then she ruled that out when she tested her vision using colors.  She said that if it was neurological, Elyse wouldn't have been able to see the colors.  Next step will be eye patching the left eye everyday for one hour AND dilate her left pupil once a week.  We will do this for 6 weeks.  If there are no improvements, then she will prescribe glasses and she is letting Milwaukee know her concerns too.  

Elyse is also due for a head & chest MRI.  We are waiting for it to be scheduled.  Her cardiologist is letting us get the heart MRI in Milwaukee along with the head.  For three years, he kept saying he was going to order the heart MRI.  So yes.  i'm anxious to see the results.  Praying that everything is growing properly AND we are praying for no changes in her head too.


NOW... AYDEN!!!!

Baby Ayden is now 10 months old.  Unfortunately he has been sick a lot.  Milk protein allergy, reflux, RSV, chronic coughing and wheezing... BUT now we are waiting for him to get diagnosed with Cystic Fibrosis.  :(  Everything is pointing to that direction.   He's had the sweat test, sleep studies, bronchoscopy and chest CT.  He passed the newborn screening for it and the sweat test BUT we are learning that Hispanics carry different genes that mutate.  On Wednesday, his pulmo doctor ordered blood work to check his DNA and his immune.  When he did the scope back in May, one of the cultures grew a bug called Pseudomonas aeruginosa (which is a very common bacteria people with Cystic Fibrosis get).  As of right now, she's treating him for that.  She prescribed him a strong and expensive antibiotic in a neutralizer form that has to be given 2 twice a day, for 30 days.  We also have to do CPT chest physiotherapy (basically we have to hit his chest above his lungs to help him breakup the mucus).  I didn't realize how exhausting that was going to be.  it's 30 min the morning and 30 min before bed.  it's tiring on us because we have to keep hitting certain areas for so many minutes and switch him position (3 total - 10 min each).

His doctor said that it's still possible that he may not have it.  We are keeping our fingers cross that he doesn't.  We're hoping to get the blood results in two weeks.   If he does have it, then she will have us see the Cystic Fibrosis team in Milwaukee.

We'll see.  so far, i haven't freak out yet. :)  After everything we dealt with Elyse, I feel i'm handling this ok.  I haven't gone all crazy and research anything yet.  I'm just waiting.  

So keep my little ones in your prayers!

 

:) Ayden was a little distracted