Lastnight around 3:50 pm my cellphone rang! I looked over at it and it said "Dr. Rizzi -- Cell" (meaning the doctor was actually calling me from his personal cellphone). I had a feeling that this phone conversation was not going to go very well since he is calling "out of the blue" and from his personal phone call! When a doctor calls from his personal cell phone it is NEVER going to be a good conversation from my experiences! He first off asked how she was feeling -- I told him that she is still very congested yet she has bloody/green sinus drainage, her ears are still sore and her cough is junky! He said that obviously the oral antibiotics that she has been taking for the past 8 months isn't going to clear things up and get her on the road to recovery! Hallelujah! Hallelujah! FINALLY! After 8 months of Mommy not being very nice and 13 sinus/ear infections/rounds of oral abx, he FINALLY agrees with me that she definitely needs IV abx to kick whatever it is out of her system! This is then where my heart dropped into my feet! He mentioned doing the endoscopic sinus surgery on her. I have been leaning towards wanting her to have this done so she can get some relief but at the same time I am scared. I know others that have to have the sinus surgery like every two months or so! I just hope she doesn't have to go thru this every couple of months. I am praying that once she has this done it will give her relief for a long time. HIS protocol for doing endoscopic sinus surgery on CF Patients is ---
14 days of IV antibiotics BEFORE the surgery to clear up any possible infections/bugs that are hiding
Do the surgery
Then an additional 7 days of IV antibiotics as a precautionary measure
That is a total of 21 days in the hospital!
He wants too see her right away! Right away! Okay that sounds fine! His secretary Ryan would be calling with the appointment time and date.Thinking we would have a week or a week and a half to prepare for the trip to Philly for the appointment! Nope! Not at all! We have a little over 48 hours to reschedule the appointments and prior engagements that we had scheduled the rest of the week because we would be going to Philly on Friday morning! Mind you the conversation was happening on Tuesday! We go Friday at 1:40 to schedule the admission and surgery! I am nervous as HELL! As scared as a virgin in a whore house! She will be having endoscopic sinus surgery, having her perforations surgically closed (if they are not already closed on their own) & tubes... But if he needs to close the perforations on his own then the tube procedure will be pushed back until her ears heal! If the perforations are closed then he will put tubes in at the same time he does the sinus procedure. She is having 2 possibly 3 procedures done! Well 4 including the PICC placement for the IV Abx!
After we hung up the phone I looked at the calendar to see what all she is going to miss while being in the hospital and I became madder than ever! There are so many things that she is going to miss and those things will never be able to be done! However, he did say that he does not want to interfere with her Kindergarten Registration which is May 8th!
April 27th -- Pre-K Picture Day! She is going to miss picture day! That is a memory that you cannot recreate! So sad!!
May 5th -- Dad's Day at Pre-K (able to attend)
May 8th -- Kindergarten Registration (MUST attend)
May 17th -- Dentist Appt -- must reschedule
May 22nd -- Pre-K Graduation -- this is her last year of Pre-K and she will NEVER have a Pre-K graduation AGAIN ... this is a big thing for children entering Kindergarten
F*ck You Cystic Fibrosis --- I HATE You
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