ENT update Feb 2013

 ENTupdateIn the last year Sophie’s pan sinusitis has become increasingly worse, the infections just do not seem to clear at all. Her ENT from Florida, Dr. Mandell had been following Sophie since birth, he saw her in the NICU and all the way up until we left Florida seven months ago. Dr Mandell performed endiscopic sinus surgery and a partial adenoid ectomy almost two years ago. Sophie was very small and fragile and the surgery did seem to help but only temporarily. We had been discussing repeating the surgery just before our relocation but I was hoping that we would not have to venture down that road again. Surgeries are scary, especially when it takes her alot longer to come out of the anesthesia than most children and keeping her oxygen levels within normal is even more difficult.

On Friday I made the almost two-hour drive to UNC Chapel Hill alone with two toddlers, I made it there and back with no incident thank goodness. It was time for Sophie’s ENT follow-up, I was dreading it because I knew what it meant. This was our second visit with her new doctor Dr. Paulson. Dr. Paulson treated one other patient with CDC before Sophie so she was already familiar with CDC.  I really liked that she remembered us even though it had been five months from our first visit.

This visit she took a longer time to evaluate Sophie and discuss what she recommended, it was apparent Sophie was battling her sinuses without success. She also recommended a new swallow study to check if there has been a change in Sophie’s aspirating, good or bad. She decided it would be best to have a new CT scan done so that she can check for disease and closure of the nasal cavities that Dr. Mandel had to reconstruct along with any new anomalies that could have formed. Since Sophie will be sedated for the CT scan the doctor wants to use a camera and check several areas including Sophie’s vocal cords to make sure there is not a deformity that can be causing the aspiration. The doctor would like to do anything and everything in her power to make Sophie’s quality of life better, she rocks!!

Additional to repairing malformations if any are found the sinus surgery would clean out Sophie’s sinuses and hopefully give her body a fighting chance to heal now that she is bigger and stronger. Sophie’s sinuses become inflamed and clogged and will not drain thus allowing bacteria to grow so severely that it become almost impossible to kill. And it can lead to pneumonia or something worse, sinus infections if left untreated can be fatal if the bacteria or fungus manage to leak into the bone or brain of an individual. It’s a potentially dangerous situation and although surgery scares me the thought of losing her scares me more.

The ENT is also going to try to get us in to see Pulmonology before the scheduled I have that’s several months away so that she and the pulmonologist can work as a team with Sophie. Sophie’s asthma and aspiration just make the situation so much more desperate. So we return in one month for her CT scan and other procedures, in the meantime I have other studies I will do locally like a new swallow study and hopefully we will have all we need to devise a course of action as I will be meeting with the ENT several hours after the procedures in a months time.

I can only pray we can find a way to help Sophie’s body build up some immunity and are able to give her a break from so much sickness. As I’ve said in the past, the sickness is by far so much worse than the syndrome. The syndrome is just part of who she is, the sickness can take her from me.


3 thoughts on “ENT update Feb 2013

  1. AnnMarie

    Saying prayers. My boys are plagued with the sinus infection part of CF.Luckily it is controlled but my oldest has had 7 sinus surgeries and my little guy has had 2.Yay for the doctor that you like that wants to make sure that Sophie has a quality life.


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