In case anybody wonered where I've been... just thought I'd give you a little update.
We went to my son's cf center for a re-check on the 17th, and since he still was not completely better they admitted him. (He had been pretty sick about a month and a half earlier, and even though he got much better, the cough would not go away after many rounds of different antibiotics, prednisone, and different neb and inhaler treatments.) They gave him a PICC line as expected (his first) and drew blood to test for like eight different allergies. Plus, while we were there they did a 72 hour fecal fat test because he hasn't gained any weight since he's been sick, although he's over the 50th percentile. I'm thinking he didn't gain weight because he's been fighting off an infection for 2 months. He actually lost a pound or two in the hospital but gained it back before we left. I don't think he liked the food much, but he's eating great since we've been home. Plus they didn't have his Pediasure there, they use Resource drinks. They're the same nutritionally, but maybe they tasted different.
Anyway, the results of the allergy tests and fat test are not back yet, and we came home with the PICC. I feel like a nurse! That's ok, I want to start school for nursing this fall. He's doing great, no coughing. It turned out to be Pseudomonas, he cultured it once before at 6 mos. old but never again after a round of inhaled Tobi. So I'm hoping the same will happen now with the Tobra and cephtaz(?). I wonder if it's been lurking in there all along just not causing any problems or not enough to show up on the throat swab cultures they do.
So we're all doing great and so happy to be home! Of course it was gorgeous weather the whole time we were there, and it's rained everyday since we got home! It wasn't too bad of an experience, except the first day I cried more than he did. The docs and nurses were great, especially 3 nurses we saw often. I must have heard how cute or funny or adorable he is hundreds of times. The nurses said they all had a crush on him and wanted to play with him when they had time. One wanted to take him home! And before we left the resident who saw him every morning came in and told me what a great job I was doing raising him and how great he looks health/weight-wise. Thankfully my son's back to 100% so YIPPEE!!
By the way, that Versed thay gave him to put in the PICC seemed awesome. He instantly went from screaming and fighting to relaxed and laughing and cooing. He looked like such a stoner<img src="i/expressions/face-icon-small-happy.gif" border="0"> They did have to put in the PICC twice because when the nurses did a dressing change they left a few inches of the end of it dangling instead of wrapped up. He somehow managed to step on it when playing and when he stood up it ripped right out of his arm. Luckily no bleeding and the stitches ripped through the plastic not his skin. So they put it back in the next day.
Sorry so long, I just wanted to tell you everything!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks to everyone who actually made it to the bottom!
I thought this pic would make someone smile, my hubby had it on the computer when I got home.
We went to my son's cf center for a re-check on the 17th, and since he still was not completely better they admitted him. (He had been pretty sick about a month and a half earlier, and even though he got much better, the cough would not go away after many rounds of different antibiotics, prednisone, and different neb and inhaler treatments.) They gave him a PICC line as expected (his first) and drew blood to test for like eight different allergies. Plus, while we were there they did a 72 hour fecal fat test because he hasn't gained any weight since he's been sick, although he's over the 50th percentile. I'm thinking he didn't gain weight because he's been fighting off an infection for 2 months. He actually lost a pound or two in the hospital but gained it back before we left. I don't think he liked the food much, but he's eating great since we've been home. Plus they didn't have his Pediasure there, they use Resource drinks. They're the same nutritionally, but maybe they tasted different.
Anyway, the results of the allergy tests and fat test are not back yet, and we came home with the PICC. I feel like a nurse! That's ok, I want to start school for nursing this fall. He's doing great, no coughing. It turned out to be Pseudomonas, he cultured it once before at 6 mos. old but never again after a round of inhaled Tobi. So I'm hoping the same will happen now with the Tobra and cephtaz(?). I wonder if it's been lurking in there all along just not causing any problems or not enough to show up on the throat swab cultures they do.
So we're all doing great and so happy to be home! Of course it was gorgeous weather the whole time we were there, and it's rained everyday since we got home! It wasn't too bad of an experience, except the first day I cried more than he did. The docs and nurses were great, especially 3 nurses we saw often. I must have heard how cute or funny or adorable he is hundreds of times. The nurses said they all had a crush on him and wanted to play with him when they had time. One wanted to take him home! And before we left the resident who saw him every morning came in and told me what a great job I was doing raising him and how great he looks health/weight-wise. Thankfully my son's back to 100% so YIPPEE!!
By the way, that Versed thay gave him to put in the PICC seemed awesome. He instantly went from screaming and fighting to relaxed and laughing and cooing. He looked like such a stoner<img src="i/expressions/face-icon-small-happy.gif" border="0"> They did have to put in the PICC twice because when the nurses did a dressing change they left a few inches of the end of it dangling instead of wrapped up. He somehow managed to step on it when playing and when he stood up it ripped right out of his arm. Luckily no bleeding and the stitches ripped through the plastic not his skin. So they put it back in the next day.
Sorry so long, I just wanted to tell you everything!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks to everyone who actually made it to the bottom!
I thought this pic would make someone smile, my hubby had it on the computer when I got home.