Well, I made an appointment with the CF Clinic yesterday, because Azer has had a wet cough for the past week. I just thought he would need the normal oral antibiotics.
He lost a pound, and he cultured Pseudomonas and MRSA for the first time. The first doctor that came in said to seriously start thinking about the G-tube. Fortunately they are not going to put it right now, but we might be looking at it a few months down the road if he doesn't start gaining weight again.
He also did a PFT (Pulmonary Function Test) today, and his lung function went down about 15%. It's a big drop, so we want to treat this aggressively and quickly.
Azer took the news hard this time. It's been about 3 years since his last admission. He started bawling when he heard the words "G-tube". Luckily we don't have to deal with that right now. I'm kind of bummed out right now. He will miss his Valentine's Day Party at school and he has been looking forward to that. It's really hard to get all this coordinated as I don't have family close by to watch Reema and get her from school. I hope this all works out. The hospital staff is very supportive in all this.
I hope they put the PICC line in as soon as possible. The last time he was admitted, it took like almost 4 days.
Well, keep us in your thoughts!
1 comment:
Sorry Azer was admitted...but it's a good think they are treating it aggressiely NOW and not when it gets worse. Praying he feels much better REAL SOON and praying for you that you can coordinate and work everything out.
I know a G-tube sounds scary to the both of you and you really would prefer to avoid it. But weight gain plays such a big role in a person with CF. It has an effect on PFT's, getting infections, etc. The healthier weight...the healthier he will be. I struggled with weight gain my entire life up until transplant. I got a feeding tube (G-tube) when I was in the 5th grade. I was so upset...but it didn't end up being a huge deal, and it really helped me gain weight.
Years later, I was able to use the drug, Megace, (an appetite stimulant) and get rid of my G-tube. But most CFers will have one at some point. So it's "ok"...and if you have any questions...feel free to ask. Think of it as taking a step in the right direction towards keeping Azer healthy (he will realize it too..maybe not now, but soon).
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