Good Clinic Day

Yesterday was a routine CF clinic visit. I had to take Azer out of school as soon as we got there. Took us almost an hour to get to the hospital.

He gained a pound and a half, and grew another half a cm! Doctor said his lungs sounded clear, even though Azer has a wet cough. Azer also has a lot of sinus drainage right now, but most of his class has that as well, so it might be a virus. Azer's PFT's were only 76%. I would have liked to see it higher, but he does have the wet cough, so hopefully that is the reason. Doctor wants him on antibiotics for 2 weeks to see if that will help clear him up. They did do a throat culture (Azer calls it the gag test)

I've been sort of worried about CFRD (CF Related Diabetes) lately, as he has been drinking water and peeing constantly. So, they ran a glucose test on his urine, and it was normal. They also drew blood yesterday, so, hopefully that runs normal as well.

 They have this new medical device called J-tip. http://www.jtip.com/  It is used for other medications, but we like it as when it is used with Lidocain, it causes the skin to be completely numb in about a second. So, I was hoping they had this in the lab before they drew his blood. It dramatically decreases Azer's anxiety about it. But in the lab, the technician said that they don't use it there, because only a nurse can administer it, because it is a medication. I know they have to follow policies for everyone's safety, but it's always difficult to see Azer crying and nervous over getting blood drawn. It was over in a few seconds, though, and he got a little toy and was ready to move on.


Azer was such a goof in the clinic. He was making jokes, and being really entertaining to all the staff. Our Child Life specialist came in and asked him if he'd like her to come to his class and talk to his class about CF. He's thinking about it. Azer is pretty good at telling other kids about CF, but most of the questions revolve around his G-button.

Azer was telling the different people in clinic yesterday that he really loves his Mic-Key button, and his happy he has it. Also, it's always great to hear from a nurse that we are doing a really great job with him. So, yay for a good clinic!

G-Tube maybe tomorrow

So, after having multiple conversations with an uncountable number of doctors and surgeons, it looks like Azer will most likely be getting his G-tube tomorrow morning. The last doctor I spoke with said she is able to put the button in, instead of having to put in a 12 inch tube first, and then waiting about a month for the button. If they can do it that way, I'm sure Azer will be pretty happy. Regardless, I think Azer is getting better about talking about the G-tube. The Child Life specialist came over again today to talk a little more with Azer. I think since I've been more relaxed talking about the G-tube has helped him relax more about it as well.

Soo ... send prayers and good thoughts our way. I'll write a post as soon as something else happens.

Addition: The actual surgeon walked in a few minutes ago ... here are the details. They will made a hole in his belly button where they will insert a laparoscopic camera. They will made an incision in his side where they will pull the stomach up to the surface, and they will inflate his abdomen with gas so they can see. If everything goes ok, they will put the Mickey button in. If things don't go right, they will make a larger incision and insert the 12 inch tube.

No Vomiting

Well, Azer still has not been having any vomiting. Today the CF doctor came in and talked more about possible SMA syndrome. Then, the GI doctors came in a few times and their theory is that it's possibly enzyme intolerance. So, we'll find out tomorrow who is right. Tomorrow they are doing a GI-study. He will drink some liquid containing calcium, and then he will go to radiology throughout the day so they can see how things are moving through his GI system.



It looks like Azer may possibly be getting the G-tube on Wednesday. The GI doctors seem to be ready to get that ball rolling, so we'll see what happens. Regardless of whether Azer gets the G-tube or not, we still need to find some enzymes that will work for him. He is still taking Pancrecarb, and the supply will not last forever, so hopefully they can find an enzyme that will not cause vomiting in him. Darn FDA...

Azer has been saying he's hungry today, but hasn't eaten much during meals. We have not been giving him any milkshakes, or Scandishakes, and have been letting him eat as he feels. No pressure. I guess that's how it should be. A Child Life specialist came in and brought a doll and talked about the G-tube with him so he could understand it. He got to touch and feel the tube and the button, and different catheters. She was very honest and down to his level, and told him that yes, it will be sore for a few days, but that in the long run, this will be a great thing for him. So, it sounds like after he gets the G-tube, he'll have to stay out of the pool for a few weeks, but after, he should be able to play ball and go swimming, and be a kid again.