Well Reeces' doctor just called....he cultured positive for that BIG ole MEAN bug....Pseud. He will start TOBI and some nasal spray for possible allergy!? I am feeling pretty overwhelmed. I have been worrying about his mickey button..his cough that wont go away....his nasal congestion (making him cough)....going to the clinic every 3-4 wks.....now we have to add another treatment into the mix....UGH!!!! Im usually good about stress but good grief.....!!!!! Im feeling it lately. My husband is the one who asked why, but Im asking WHY? WHY? WHY?? Im tired of doing this sometimes..BUT I will NOT STOP cuz this is my son and I will NOT let him down.Im sooooooooooooooo tired of going to the clinic and crossing my fingers that he doesn't get admitted. Im soooooooooo tired of worrying about my son's health....why can't he just be healthy!!!!!!!!!!!!???????????? I hope ya'll dont take this the wrong way. I just need to vent and let some of it out. I need a vacation from it all. Well sorry I rambled. I know we don't have it the worst yet BUT it sure seems like it. Everytime we turn around we are pumping more drugs into our sons little frail body. It just doesnt seem right. And hes not getting any better. Well I'll go for now. Thanks forletting me get this off my chest. <img src="i/expressions/face-icon-small-smile.gif" border="0">
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when will it STOP?????????
- Thread starter MOME2RT
- Start date
sorry about the pseudo -- when DS was diagnosed it was a kick in the gut 'cuz it brought home to me that maybe he actually did have cystic fibrosis. Until that point, I kept believing it was all a big mistake. There are different forms of pseudo -- mucoid and nonmucoid. DS has culutured the nonmucoid. It's my understanding that with early treatment, pseudo can very well be erradicated in very small children. So hopefully the tobi will do the trick.
I know what you mean about one more treatment. I'm feeling that way about pulmozyme and that was prescribed for the first time 6 months ago. Don't worry, you'll get into a routine and it'll all be second nature. And besides, maybe it'll be erradicated and he won't have to be on tobi long.
We do DS's tobi early morning and after work. The morning one -- I get up at 6 a.m. and do DS's CPT, then I put him in bed with DS who dozes while he holds the tobi mask and I get ready for work. After work we do CPT, then tobi while DS watches cartoons or dvds in our room. Just gotta do whatever we can to keep our children's lungs happy and healthy.
Liza aka ratatosk
I know what you mean about one more treatment. I'm feeling that way about pulmozyme and that was prescribed for the first time 6 months ago. Don't worry, you'll get into a routine and it'll all be second nature. And besides, maybe it'll be erradicated and he won't have to be on tobi long.
We do DS's tobi early morning and after work. The morning one -- I get up at 6 a.m. and do DS's CPT, then I put him in bed with DS who dozes while he holds the tobi mask and I get ready for work. After work we do CPT, then tobi while DS watches cartoons or dvds in our room. Just gotta do whatever we can to keep our children's lungs happy and healthy.
Liza aka ratatosk
Oh Leah,
I feel for you. You sound like me, normally handle everything until it all starts piling up. Then I break down, question the why's of it all, cry and get back to business. We JUST finished a 28 day course of TOBI, along with a 20-day course of Cipro and Bactrim because dd cultured 3 types of Pseudo. All this after spending two weeks in the hospital in January. They were going to readmit her in March but I talked them out of it because we had Disney plans. (I don't normally go against the doctor, but she had been looking forward to this since late January and we didn't want to break her heart or lose the money) They opted for TOBI instead and it did the trick, I think. She just finished with it Sunday night so we'll see what the next few days bring.
Now, allergy season is starting, which she has some issues with. It really never ends in the world of CF.
I hate CF, I hate CF, I hate CF!!!!
I feel for you. You sound like me, normally handle everything until it all starts piling up. Then I break down, question the why's of it all, cry and get back to business. We JUST finished a 28 day course of TOBI, along with a 20-day course of Cipro and Bactrim because dd cultured 3 types of Pseudo. All this after spending two weeks in the hospital in January. They were going to readmit her in March but I talked them out of it because we had Disney plans. (I don't normally go against the doctor, but she had been looking forward to this since late January and we didn't want to break her heart or lose the money) They opted for TOBI instead and it did the trick, I think. She just finished with it Sunday night so we'll see what the next few days bring.
Now, allergy season is starting, which she has some issues with. It really never ends in the world of CF.
I hate CF, I hate CF, I hate CF!!!!
Emily65Roses
New member
I am not here to downplay your concerns. I just want to tell you, pseudomonas is not a HUGE deal. I read "big ole MEAN bug" and was waiting to see cepacia, or perhaps MRSA. I've had MRSA since I was 16 (22 now), and it hasn't killed me yet.
Like I said, not here to say anything like "Hey, don't worry, you're being stupid." Just to let you know he'll be all right. Continue to worry, I can't blame you. But he should be fine. <img src="i/expressions/rose.gif" border="0">
Like I said, not here to say anything like "Hey, don't worry, you're being stupid." Just to let you know he'll be all right. Continue to worry, I can't blame you. But he should be fine. <img src="i/expressions/rose.gif" border="0">
Usually when DS has had clinic appointments and they do cultures, it's been in the middle of winter and he usually has some sinus issues going. So I've always believed the the pseudo was growing in his nasal passages.
Last fall he didn't culture pseudo, so I thought it was gone for good. DS's last appointment last month, I thought for sure he'd culture nothing 'cuz he didn't have a boogery nose -- surprise -- Non-mucoid pseudo and HIB. According to the labs they're suseptible (treatable) to all kinds of different antibiotics. But I was soooo disappointed. I'm still a little upset, sad about the whole thing.
Liza
Last fall he didn't culture pseudo, so I thought it was gone for good. DS's last appointment last month, I thought for sure he'd culture nothing 'cuz he didn't have a boogery nose -- surprise -- Non-mucoid pseudo and HIB. According to the labs they're suseptible (treatable) to all kinds of different antibiotics. But I was soooo disappointed. I'm still a little upset, sad about the whole thing.
Liza
Leah, it seems like its always one more thing. Sometimes more than you can handle. It does seem like we are always living on the edge of an admission. It is very hard to plan anything in case someone gets sick.
How is Reece's button, any better?
I need a vacation too, where are we going?
How is Reece's button, any better?
I need a vacation too, where are we going?
Reece DOES also have MRSA....I know he will be fine but its that intial etched in stone. You just dont want your child to be sick.... I just feel he is ONLY 3 and has been in the hosptial 5x with "bad" lungs. He already has a great deal of lung damage to his lower left lobe, and some to his upper right lobe.
Jane, Reeces button is good...lol thanks for asking. The resident called today too about that said to keep putting that triamcinolone around it for the granulation.
I was thinking a sunny place with a cool breeze and a nice fruity drink to sip on. Someone giving me a massage and catering to my every need!!!!!!! Lets go!!!!
I was thinking a sunny place with a cool breeze and a nice fruity drink to sip on. Someone giving me a massage and catering to my every need!!!!!!! Lets go!!!!
3timesthefun
New member
Leah,
I hear you. I dread going to the clinic. No matter what they always want to add something on one of my kids. Why can't you just go and get some good news every once in awhile. Hang in there, you can do it. I know it can get overwhelming at times, but he needs you. Why don't you lock yourself in the bathroom, take a nice hot bath and drink a nice glass of wine, have a second for me...
I hear you. I dread going to the clinic. No matter what they always want to add something on one of my kids. Why can't you just go and get some good news every once in awhile. Hang in there, you can do it. I know it can get overwhelming at times, but he needs you. Why don't you lock yourself in the bathroom, take a nice hot bath and drink a nice glass of wine, have a second for me...
Leah,
I don't have any suggestions to offer, just some support for your venting and feelings. I'm sorry to hear that it's been such a rough time for you guys. It can all be so frustrating sometimes.
Just an FYI, kind of like Em said... Mark has cultured Pseudo since he was 3 or 4. He still cultues it every few years, sometimes 2-3x in a year, but other than having to do tobi (which will get better as reece gets older when he can do tx all by himself), he is really healthy. It doesn't mean this is it. I know you already know that, but I thought maybe hearing it might help.
I'm so sorry you are having this tough time. We're thinking of you and will be praying for his response to the tobi. Many cyber hugs headed your way!!!
Email me if you need to. I know you have it, but just in case division902@hotmail.com.
I don't have any suggestions to offer, just some support for your venting and feelings. I'm sorry to hear that it's been such a rough time for you guys. It can all be so frustrating sometimes.
Just an FYI, kind of like Em said... Mark has cultured Pseudo since he was 3 or 4. He still cultues it every few years, sometimes 2-3x in a year, but other than having to do tobi (which will get better as reece gets older when he can do tx all by himself), he is really healthy. It doesn't mean this is it. I know you already know that, but I thought maybe hearing it might help.
I'm so sorry you are having this tough time. We're thinking of you and will be praying for his response to the tobi. Many cyber hugs headed your way!!!
Email me if you need to. I know you have it, but just in case division902@hotmail.com.
I really know what you are going through. I am going throught the same with my son and have since August. His doctor is three and half hours away and starting in August he started getting sick first with bonchitis and he ended up being admited for two weeks in Oct. We were stessed out from the trips, the cf, and the bills pilling up from time off of work and the expense of traveling. Luckily the hopsital and a foundation of cf helped to pay our bills for the month of oct. He was staying sick not gaining weight and then he was diagnosed with pseudo and msra. It meant isolation in the hopsital those two weeks which was miserable. We continued to go back every three weeks. In decemember for christmas break we were there for 5 days getting a feeding tube put in his nose. It did good his weight started coming up. Then January came and another 5 days for the mickey. He is gaining weight and his functions are starting to return to more normal. What is normal with cf though. New medicines were added during this time, (Tobi and periactin). We were already on eight why not two more. But my son will be a teenager on the fourth of May and we are dealing with the rebellion of not wanting to do treatments and feeling more different and then he had to go through all this. So I do understand and feel for you. I hope your little one does start to turn around for the better. I will keep you in my prayers.
Kandi
mother of 3
Eric soon to be 13 with cf
Anthony 11 w/o cf
Megan 3 w/o cf
Kandi
mother of 3
Eric soon to be 13 with cf
Anthony 11 w/o cf
Megan 3 w/o cf
Leah
Kait has pseudomonas and MRSA also and at the present time she is doing very well. I do understand your fears, concerns and the stress, not mentioning how hard it is to hear that your child has now cultured????? I too always fear what the next clinic appt will show.
I am sorry to hear about Reece going through all of this ....ecspecially at only 3 years old.
You and Reece are in my prayers!
Kaitsmom<img src="i/expressions/rose.gif" border="0">
Kait has pseudomonas and MRSA also and at the present time she is doing very well. I do understand your fears, concerns and the stress, not mentioning how hard it is to hear that your child has now cultured????? I too always fear what the next clinic appt will show.
I am sorry to hear about Reece going through all of this ....ecspecially at only 3 years old.
You and Reece are in my prayers!
Kaitsmom<img src="i/expressions/rose.gif" border="0">