Wednesday, December 19, 2012

Christmas joy:)

We are happy to report after Elena's follow-up appointment with Dr. McKean that we are staying home for the holidays; no hospital visits for us!! Her lung function was 97%! We are also happy that she is recovering so well. So much to be thankful for this Christmas.

She does not need to go back to see Dr. McKean until after her birthday in March. We are rejoicing a lot in our house tonight with a lot of giddy giggling going on.

Monday, December 10, 2012

Update on the two extreme E's

Here is the update:
Everett (the youngest E)
After meeting with Dr. Miller today, Everett was diagnosed with bronchitis and a viral infection. He is on an antibiotic for the infection. He is doing breathing treatments 3x a day (with his big sister) and it was suggested that he does chest pt. Ev is also taking Mucinex to help clear out all the guck. His iron was low, so we are back to giving him iron supplements once a day. This will be a regular thing now. 
Elena (the eldest E)
Dr. McKean called me tonight and said that Elena's throat culture came back with "stenotrophomonas". Learn about it here:
He prescribed her to a new antibiotic since the one she is currently on should not help with what she has. McKean was surprised to learn that she was doing better on the "wrong" antibiotic. He wants to wait and see her a week from tomorrow as to give the new antibiotic time to heal her. So, we will not be going in on Weds for an appointment. Meanwhile, she has not had anymore runny nose or cough episodes.
We will let you know how they do!

Thursday, December 6, 2012

Given another chance...

We visited Dr. McKean yesterday for a CF check up. For the past 2 months our family has rotated, shared, and swapped sickness. No amount of hand sanitizer and hand washing seems to prevent the inevitable.

I always have a sinking feeling in the pit of stomach prior to CF well checks. Usually, we are surprised by some fluky crazy thing she has and that we were unaware of. As a parent, you feel like you have let your child down by not knowing they were sick.  We have learned with CF you never know when they are really going to get super just seems to spring on you!

Before this visit, Joel and I knew she was probably going to have issues and she does. Her lung function was down in the 70's which is very low for her. She is usually high 90's or even above 100. When her function gets this low, there is usually talk about a hospital visit. We are very thankful that Dr. McKean trusts that our family will work hard to get the right meds in at the right times! We are going to fight whatever this lung deal-e-o is at home and hopefully succeed like the last time we had this scare a few months back.

Elena is a tough little girl that we know can over come this! With her low lung function, she still managed to run a race with me on Sunday prior to her appointment!

Joel and I feel confident she will overcome this.  We will know for sure after her follow up visit next Wednesday.

Want to see what my family is up to?