Friday, February 20, 2009

TOBI day one

So the TOBI arrived last night. Jack got the first neb with his vest this morning. It's such a long treatment and he begs and begs to be done with it. It's so hard at age 3 to get through to him that this is medicine to help him. He sees it as pure inconvenience! So it pushes his regular neb of Pulmozyme back through to the afternoon. Then another of TOBI later. It's going to be a long 3 weeks! I think this is one of the hardest parts of CF. Adding in extra treatments. I know as he gets older he will understand a little bit more but I really don't think it will get any easier trying to pin him down to take them.

My other frustration is getting people to understand that Jack is, medically, not like their toddler. I have to explain to the same person over and over and over again as to why Jack is taking medication for what it seemingly an innocent cough. They try to compare Jack to their child and it's like comparing apples to oranges. It will never work. It's tiring and frustrating. I normally just give up and let it go. Their giving medical advise is most humorous as well. *sigh* Oh well. That too is a battle I don't I will ever win.

We got more snow last night. Enough that you would not tell where our driveway was this morning! Although pretty, I am done with snow for the season. The temps are to get back up into the 40's by next week. No wonder everyone is so sick.

Tuesday, February 17, 2009

Clinic visit

Today was a LONG clinic visit. They are more than happy with Jack's growth. We all got a chuckle about the comment our pediatrician made about Jack being borderline obese! Ha! Oh well. I think she forgets sometimes she is not dealing with your "normal" child.

Jack has had a lingering cough so he is going to go on Tobi. An oral anitbiotic is the normal route but since Jack's bout with C-diff we try really hard to stay away from them. So 3 weeks of Tobi it is. Not overly excited about this. Jack isn't the best when it comes to nebs!

Today was also the learning day for the Fun Study he is participating in. It was 3 hours of learning about food, measuring food and reading labels. It was a long, long day. Jack was a trooper and was rewarded with a Kit Kat from the flower shop before we left the hospital! The Fun Study measures the growth of CF children. They take into account the height and weight of the parents as well. It goes for 18mos - 2 yrs. Jack is in a couple other sudies too. We all know how vital patient participation is in all of this research. So a few extra hours here and there mean nothing if a cure can be found.

I am also very excited about the news of our very own CF walk in June! It will be so nice not to have to drive an hour to get to a walk. Granted, it won't be at the zoo but now that it's closer to home, more of our friends are more likely to join us.

Thursday, January 29, 2009

My first post!

Ok - I decided to start a blog for Jack. We have a carepage but I try to use it only when he is ill and update when needed when he is healthy.

So let's see, As of right now Jack is healthy. He hasn't had any major illnesses for a year now. Last year at this time he battled C-diff (Chlostridium Difficile)twice. This was a horrible experience. There were times I was not sure he was going to pull through. The stress of being "on-call" for possible surgery and other handful of potential dangers was a lot to handle. Jack was in Rainbow Babies for 3 weeks each time. He was the worst pediatric case they had ever seen. Not something you really strive for.

A little about C-diff. It was be named one of the new super bugs. It is right up there with MRSA. Often times it is picked up in hospitals after a lengthy stay or after surgery. Jack had neither of these so were are not sure where he picked it up. A trip to the supermarket and touching all of the carts could have easily done it.