Happy New Year!!

I hope everyone had a great time while staying safe! We went over to our pastor's house for food, fun and fellowship. It was a great time..Julie, I finally played Bunco!! I got the biggest looser award..Yea me!




Chey is still on her IV's, doing pretty good. Still has a very wet sounding cough but only occasionally. I am getting pretty good at all the IV stuff and remembering to monitor her blood pressure.



I had previously said they had done a bunch of tests while we were in the hospital and all the results were coming back normal or close to it. Well, that stopped with the echo.



The echo showed she has Mild Aortic Stenosis and Left Ventricular Hypertrophy. Hence the reason for the blood pressure problems. He said, while he is not dismissing this as a mild problem, we have bigger problems right now and that is the loss of lung function. He is pretty sure the cause is the Left Main Bronchial Stenosis.



We are gearing up to leave on Sunday for St. Louis..Chey has to be at Children's on Monday morning at 5:45 AM. I have been on the phone with same day surgery and the surgeons office for the last few days trying to get things straightened out. Same day surgery thinks she is too sick to have surgery..surgeons office said not to worry about what they said...she is so sick because she needs the surgery. The doctors associate also said we may be at a point in treatment that we need to start seeing the CF team in St. Louis. I am not so sure I like that idea for several reasons. 1) We would be saying our local doc is not good enough to care for her. 2) she is so far progressed that local doc cant care for her. 3) we are back to being close enough for them to use the T word.



We also discussed the fact that the every 3 months thing is not working and they may need to do something different as far as opening the bronchus. She did also say, the main doctor may still want to do the dilitation and just do it every two months. Which would work a little easier for us since her local CF doc wants her to start going into the hospital every three months for a tuneup. He said if she is not sick, it would be for 2 weeks, if she is..it would be for 3 weeks.



I really dont know how people cope with chronic illness and such if they dont know the Lord. Sometimes it seems too hard with Him. We have to trust in Him....and we do!!!



I appreciate your prayers and kind words..I will update on Monday after Cheys surgery.



Love and hugs,

Debbie