Saturday/Sunday Update

Yesterday the doc came in and said that they wanted to send us home.  I told them I was uncomfortable with that.  He is still so congested, and his cough sounds horrible with the allergy flare up.  His lung function is right at 60%.  I told them I would rather keep him here two more days and repeat the lung function on Monday just to make sure that he is still going up and remaining stable.  I would rather stay here two more days just to make sure, than to go home and be back in three weeks.

He actually argued for about 30 minutes.  This doctor is not used to treating Nicholas, and I don’t like doctors that are condescending and treat me like I am stupid.  Needless to say, I won.  So Monday, they are repeating the lung function.  If everything is fine, and I’m sure it will be, we will probably go home.  Pray that the numbers are the same or higher so we can go home.  I am so ready to go home.  I will let you guys know what his numbers are as soon as I can.

Robin

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Wednesday Update

A few things have happened today.  First thing this morning the docs came in.  Different therapists and nurses had told them that Nicholas was miserable with a stuffy nose, runny nose, sneezing, sore throat, etc.  They had already decided to do the allergy testing but this was confirmation to them that it needed to be done. 

Because Nicholas has cf, he cannot take an antihistamine.  Those types of drugs dry up the mucous in his lungs and it gets stuck so it can’t come out.  So they gave him two different nasal sprays.  They did the skin test and it came back positive for aspergillus.  Yesterday I said that aspergillus is a fungus and one type is.  BUT this type is a mold.  It can be found in just about anything – especially dirt.  All of us probably have it in our lungs, but it doesn’t bother us unless we are allergic to it, and he is. 

They also started him on the prednisone today, which should definitely help with the allergy.  We know from now on that when his allergies flare up, if we do what we are doing now, we can probably prevent it from going to his chest.  That is awesome.  He had a few side effects from it at first – he was a little dizzy, weak in the knees, shaky, and he was wound up so tight, it was hilarious.  After a few hours, he was much better.  It definitely has already increased his appetite.  He gets double portions for his meals, and he has the nurses ask for third helpings of pudding (he’s had 4 cups today) and an additional TWO helpings of beef tips and noodles for supper.  So he has four helpings total. 😀 

By 8:30, he had crashed already.  Hopefully, we are on the right track and he will feel better soon – as far as the allergy thing goes.  He is feeling much better in general.  We just have to get that lung function up.

Robin