Well I just realized I never posted a blog after Lily's doctor appointment last week. Oops!
Anyway! I was originally going to post an update on April 1st, which was 2 months on Kalydeco but Lily was sick & I didn't want to make a negative post on a positive day. Since then, things are better. On Easter Lily woke up with a fever & it lasted 3 days. It never got very high, but you could tell it was making her feel icky.. On top of that, she was sneezing, coughing, and had a runny/stopped up nose. After those 3 days of what I assume was just a cold (thank goodness!) she carried on with a nasty sounded cough. For about a week this cough was really bad during the night & in the mornings, taking me back to pre-Kalydeco days. It reminded me of all the times I just had to sit there rubbing & patting her back, while holding a cup for her to get gunk up in through out the night & mornings.
It had been a month since her last CF clinic check up & by that appointment she was back to her sassy self, just had that lingering cough. Her doctor prescribed her to an antibiotic called Bactrim, that she has been on quite often. Her pulse ox was at 93, which is just a tab bit lower than her usual but I expected it because of the cold & cough. Her PFT's were lower too, but again, expected it. Her weight gain was up from 33.4 to 33.9. Wasn't much, but we will take it. Much, much better than the 28lbs we were working with just 2 1/2 short months ago.
We did, however, get some amazing news while we were there. At her last appointment, her doctor had us go over to the hospital to get a chest X-ray. He wanted to see what was going on with her lungs since starting Kalydeco. He was proud to report that her left lung showed slight improvement since the previous X-rays pre-Kalydeco. I was so happy when he told me! As you know, her left lung collapsed back in October & could never regain any type of normalcy because of the constant infection that was in it. We were afraid it was dead & wouldn't come back. Showing "slight improvement" after only being on Kalydeco for 2 months is huge to me & definitely put a smile on my face & hope in my heart :)
I've talked with the transplant doctors in St Louis & I am still deciding when it comes to going there for the evaluation. I feel like at this time, she is no where close to needing a transplant anymore but having them look at her lungs would be good just for another opinion other than the doctors who have looked at her at our hospital. It's just a tough situation that I'm not ready to deal with just yet, although I know I can't keep pushing it off.
Anyways, today is day 7 of the 10 day antibiotic & things are going well :). Lily's cough has almost disappeared & she is back to feeling good again.
Before she got the cold symptoms & fever, I was ready to send her back to school so she could finish out her last month of kindergarten actually with her class, but the sickness reminded me of how fast & easily she gets sick, so now I am back to wondering if sticking to home schooling is best. Even though going back to school is what I really want for her.. I got to figure what's best, health wise. She's missed out on so much as it is :(
When all is said & done, Kalydeco has truly been a miracle. I can't say that there are days that we can totally forget she has CF, but there are definitely hours that we forget about it. We can go out & do stuff during the days without her getting tired or have trouble breathing. Inbetween tube feeds, medicines & treatments, Lily is a normal everyday 5 year old (6 in a few months!) & I couldn't be happier. It's still crazy to think she is on Kalydeco. It was something we dreamt of since the day we heard of the promising life changing drug. We are definitely blessed to have it for her to take. The 7:30am & 7:30pm dose schedule has become just apart of life & is surprisingly very easy to stick with.
Here are some pictures from the month that wouldn't have happened without Kalydeco:
Anyway! I was originally going to post an update on April 1st, which was 2 months on Kalydeco but Lily was sick & I didn't want to make a negative post on a positive day. Since then, things are better. On Easter Lily woke up with a fever & it lasted 3 days. It never got very high, but you could tell it was making her feel icky.. On top of that, she was sneezing, coughing, and had a runny/stopped up nose. After those 3 days of what I assume was just a cold (thank goodness!) she carried on with a nasty sounded cough. For about a week this cough was really bad during the night & in the mornings, taking me back to pre-Kalydeco days. It reminded me of all the times I just had to sit there rubbing & patting her back, while holding a cup for her to get gunk up in through out the night & mornings.
It had been a month since her last CF clinic check up & by that appointment she was back to her sassy self, just had that lingering cough. Her doctor prescribed her to an antibiotic called Bactrim, that she has been on quite often. Her pulse ox was at 93, which is just a tab bit lower than her usual but I expected it because of the cold & cough. Her PFT's were lower too, but again, expected it. Her weight gain was up from 33.4 to 33.9. Wasn't much, but we will take it. Much, much better than the 28lbs we were working with just 2 1/2 short months ago.
We did, however, get some amazing news while we were there. At her last appointment, her doctor had us go over to the hospital to get a chest X-ray. He wanted to see what was going on with her lungs since starting Kalydeco. He was proud to report that her left lung showed slight improvement since the previous X-rays pre-Kalydeco. I was so happy when he told me! As you know, her left lung collapsed back in October & could never regain any type of normalcy because of the constant infection that was in it. We were afraid it was dead & wouldn't come back. Showing "slight improvement" after only being on Kalydeco for 2 months is huge to me & definitely put a smile on my face & hope in my heart :)
I've talked with the transplant doctors in St Louis & I am still deciding when it comes to going there for the evaluation. I feel like at this time, she is no where close to needing a transplant anymore but having them look at her lungs would be good just for another opinion other than the doctors who have looked at her at our hospital. It's just a tough situation that I'm not ready to deal with just yet, although I know I can't keep pushing it off.
Anyways, today is day 7 of the 10 day antibiotic & things are going well :). Lily's cough has almost disappeared & she is back to feeling good again.
Before she got the cold symptoms & fever, I was ready to send her back to school so she could finish out her last month of kindergarten actually with her class, but the sickness reminded me of how fast & easily she gets sick, so now I am back to wondering if sticking to home schooling is best. Even though going back to school is what I really want for her.. I got to figure what's best, health wise. She's missed out on so much as it is :(
When all is said & done, Kalydeco has truly been a miracle. I can't say that there are days that we can totally forget she has CF, but there are definitely hours that we forget about it. We can go out & do stuff during the days without her getting tired or have trouble breathing. Inbetween tube feeds, medicines & treatments, Lily is a normal everyday 5 year old (6 in a few months!) & I couldn't be happier. It's still crazy to think she is on Kalydeco. It was something we dreamt of since the day we heard of the promising life changing drug. We are definitely blessed to have it for her to take. The 7:30am & 7:30pm dose schedule has become just apart of life & is surprisingly very easy to stick with.
Here are some pictures from the month that wouldn't have happened without Kalydeco:
Thanks Kalydeco!!!!! :)