At Home Treatment

We are all so happy to have him home. Those 8 days in the hospital seemed to last so long. We were able to celebrate his 9th birthday at home, which was a huge blessing. It was a cold day. It was cute watching them play with Legos on a blanket in front of the fireplace.

It hasn't been exactly a walk in the park doing IV treatment at home. The medication runs for 2 hours twice a day. It has been getting easier to hook him up. It is a process, but it is becoming second nature. But, because it does run for two hours, and it has to be twelve hours apart, the time schedule is difficult. I have to get up in the middle of the night to start it, which is challenging, but doable. It is tiring.

They took a blood sample last Thursday to test the levels of the antifungal medication. The doctor said if those levels are acceptable, then he can switch him to an oral equivalent.

He is also on a high dose of oral steroids. The only side effect that we have seen is a dramatic increase in his appetite. For the first time in his life, that I can remember, he ate two hot dogs and was able to eat a whole slice of his birthday cake. In one meal. He has been experiencing some dizziness, which I believe is due to the antifungal medicine.

I'm hoping in the next day or so, the Picc line can be taken out!

ABPA

So, not all of the blood tests have come back yet, but they have started to treat Azer for ABPA, Allergic Bronchopulmonary Aspergillosis.  They are treating him for it based on what the CT scan looked like. Lots of people, even people without CF, have Aspergillus in their airways, and CF people may even test positive for it in cultures, but it is the allergic, asthmatic symptoms that can cause problems.

So, they are treating him with an antifungal medication through his Picc line, and they are continuing the antibiotic through his Picc line as well. The side effects from the antifungal medication are a bit scary, but they run it very slow. It's this small bag of medicine that slowly drips for like an hour. He is also on a very high dose of steroids for a month. Also scary.

Thursday, they are going to test to see how high the level of the antifungal medication is in his blood. Then, they can determine if we can continue IV treatment at home.