Saturday, November 7, 2009

Naythan Update from His Hospital Stay

I know it's been a while since my last post but things have been crazy here. Naythan has been off his PICC line and antibiotics for 2 weeks now. He's staying healthy for the moment. We have our SSI hearing on Monday after waiting for 3 years for it. They were hoping I would back down but not this mama. I have other plans for my son. I want him to be taken care of for the rest of his life.

Naythan had his first exacerbation the end of October. We were on IV antibiotics for 2 weeks. I was so angry at those doctors I thought I was going to pop a vein in my head. The Pediatrician was the one who finally got the CF docs at Children's to admit Naythan to the hospital. This doctor made me so mad. He told my Peds doc that the only reason he was admitting Naythan was to make her happy. How could he not think something was wrong with Naythan? He was coughing at this point for 8 1/2 weeks, which him coughing isn't normal for him. You are probably thinking, If you don't have a child with CF, isn't a cough normal? No, in a child it isn't normal. The coughing on a daily basis comes with age, because there will be more damage to the lungs. His lungs right now don't have any damage, and he shouldn't be coughing.

After we finally did get admitted, that Tuesday (NIGHT) because the hospital was so over packed and no room for anyone. There were 3 other CF patients that were on the floor. All with exacerbations. They hooked him up to an IV right away and got the Anti's started right away. They messed up his meds, which is ok because I brought my own from home and made sure I got them in him. Some of his meds weren't even in the syringes for him. They were empty and the nurse thought I was crazy when I told her it was empty. Anyways, I digress...

The next morning the other doctor in the office (I guess he's coming on as a full time doctor now) showed up with a bunch of medical students. The thing I hate worse is a bunch of kids my age all staring at me weird as I talk about how sick my son is. Well, this doctor got his ass handed to him that day. He came in telling me, oh we're only going to give him 2 days of antibiotics and send him home. WHAT?! I don't think so. I told him there was no way it was going to happen. I had a daughter at home with possible pnuemonia and I wasn't taking him home like that. He said, "Fine, we'll send him home with oral antibiotics and he should be fine." WHAT?! I swear I was going to drop my jaw at this point. I told him hello we've been on 3 other oral antibiotics and none of them have worked. He tells me, "Then what do you want to do." This is where I stood up for my son at this point. I told him "You're going to do the whole course of antibiotics, give him a PICC line and we'll go home and do them." I swear I saw a couple of med student's mouths drop.

He looked at me like I was an alien and at this point I probably was acting like an alien. I hadn't had a good nights sleep in 2 months as this cough had kept him up at night and I had other sick kids at home. He said to me the alien "Are you sure that is what you want?" Oh no I just told you this to make myself look stupid, oh course it's what I want. It's what I knew my son needed. I am glad I made the doctors do it. Naythan no longer has a cough and is feeling better. Unfortunately, his weight is still low, and only in the 50th percentile but it's getting there.

We did switch clinics though too. I got tired of the crap from this one. Yes, I do drive 2 hours one way to the new clinic. But you know what? This clinic is my dream clinic. They have done TONS of testing for him, stuff the old clinic never did. They are working with me diligently to get Naythan to a healthy spot. Almost all of his tests have come back normal. He had tests done for vitamin levels, allergies, and other things. All these are perfect which means I'm doing my job right. We're only waiting on the fecal elatase test to see if we need to change enzymes for him. I don't think the ones he's on are working for him. I'll blog more tomorrow. I think you've had enough today.