pulmonolgy appt

Friday Hannah had a pulmonology appt.  For a while now she has had this weird cough that sounds like she is coughing her trach out.  And it gets hard to suction her.  I had suspected for a while that her Tracheomalacia had either come back or just gotten worse.  A little history,  Hannah aspirated right after she was born.  That resulted in a NICU stay of three weeks and her first helicopter ride.  that was the beginning of many aspiration pneumonias.  When she was 3 1/2yo she got her trach.  The next year we changed hospitals to AI duPont in Wilmington.  We were still in the hospital all the time for aspirations no matter what we did. We almost lost her several times.  Finally the pulmonologist (that we didn't like) suggested having a laryngotraceal separation surgery done.  It was a scary decision and I got in touch with our old ENT who had left U of MD and we trusted.  He said that he had even suggested having that done after she got her trach.  the next time she was admitted for an aspriration we had another pulmo (Dr C) that we had seen a lot...he gave me some good advice and we decided to do the surgery.  After that she never had another pneumonia!  While there a 3rd pulmo listened to her and asked if she had tracheomalacia since it sounded like that to her.  the next time we saw our pulmo I mentioned it and she said that no she DID NOT have it.  She did  a Bronchoscopy on Hannah.  When she came out she said she had very severe tracheomalacia!  That is when she put her on CPAP.  She had no bedside manner at all and I just didn't like her attitude.  We saw  Dr C again and I asked him if he would take Hannah as a patient and explained what had happened. He was more than happy to take her as a patient.  He is now one of our fav drs!  He put her on CPAP through the vent and I kept her on it most of the time.   Earlier this year I  decided since she was doing so good and her bronch looked good to not use the CPAP as much during the day.  Now, it looks like the tracheomalcia is getting worse so he wants too a bronch on her and see if we can put a bigger trach in.  He did stop a couple of her neb treatments, since her lungs stay clear most of the time.  But is that because she gets so many neb treatments ?  that's the question  LOL
  we also saw nephrology  and he did reduce her ferrous sulfate a little ( I am tired of that making her bms black and sticky) 
  Hannah keeps getting  splotchy spots and sometimes hives on her belly and groin area, it seems to be getting worse so I am going to make an appt with Allergy.  The nephrologist was concerned about that and we went over her meds again and still can't figure it out.  Leave it to Hannah to make everything hard to figure out :)   I have a pic on my cell but for some reason can't get it on here.

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