Viral vs bacterial illness

[hcs_mom]

Just something I was thinking about (well, freaking out about actually)...

When Hannah has a cold, she handles it pretty well anymore. Her sats will be lower, sometimes her HR will go up some, but sats are never low enough to need O2, but man, this tracheitis hits, and all breaks loose. The sats drop significantly, requiring O2, the HR goes sky high. I'm trying to reassure myself that this isn't an indication that she's not going to be OK when she gets the trach out, because, once the trach is gone, so is the tracheitis (right???) and that worry will be gone (not that new ones won't replace it! )

Anyway, just wondering what your experience was...
Jennie

[sandra]

Brian is the same way. Most of his colds end up moving down and causing a flare up of the bacteria that he is colonized with. I am hoping when the trach is out that will be less likely to happen, but I really don't know.

[Ann]

Sandra,
Your explanation makes so much sense! Jack can't seem to "kick" whatever is going on with him. He'll be on antibiotics for awhile, seem to get better, but a few days after we finish, he starts up again. So, there must be something "down there" that keeps flaring up. This has been the most frustrating Winter for me and Jack ever! Jack just started on yet another antibiotic and his pulmonologist mentioned putting him on Tobi. Has Brian ever been on Tobi? Makes me nervous to be heading down this road.

Jennie,
I've got to believe once Hannah gets her trach out, her risks for getting infections have to decrease significantly. You've had one LONG year and I hope and pray that the darn trach comes out soon!

[sandra]

Inhaled tobi or the oral antibiotic? We have had to use both. We have used the oral one only once or twice. I know the dr tries to avoid it because it is so strong, but it has been necessary before.

We use the inhaled tobi about every other month. It really is a great medication. It has really helped Brian and I know the pulmo. would rather use it instead of an oral antibiotic.

The inhaled form is very expensive, but I can use one box several times. Our copay isn't too bad, but when I see the total cost I am very thankful for insurance.

Brian is still not well either. He is on an oral antibiotic now.

[Ann]

Sandra - I think it would be inhaled Tobi. Fortunately, we have good insurance as well.

Hope Brian kicks whatever is going on with him soon!

[Kate]

What is tracheitis? Is it just when a culture comes back w/infection? Right now Mitchell has staph in his trach once again and also another type of infection-not sure what it was called. He seems to respond well with antibiotics but I feel like we are always getting infections-It makes sence that once the trach is gone the infections will stop. I just don't get why some kids seem to never get infections in their trach and some like Mitchell ALWAYS get them. Are we doing something wrong? Or are some kids just more sensitive to "bugs"

[twintotwin]

Jennie- I don't think the boys have had tracheitis in some time. I have noticed the sats seem to drop more with an inner ear infection rather than a cold. That is weird. And they get lots of ear infections!
Please tell Hannah to stay healthy this weekend!!!
Let us know how the scope goes.

Hugs!

[LeslieML]

I am not sure if we ever had trachietis either. Chase is colonized with Staph and pseudamonas. I remember the first time his temp went up, hr up and sats way down I rushed to the ER positive it was something huge. Turns out it was an ear infection!! as it was the next two times that happened.
When he gets a viral his sats are a little lower than normal..bouncing between 90-94 as he first falls asleep and then they sorta hang out at 97 after he has been down awhile. His heart rate while sleeping w/out being sick is 80-88, while with a bug it hovers around 100-120 but with an ear infection the high heart rate alarms at 170!!!

[sassyangel4u2nv]

I do not understand the difference between tracheitis, psuedomonias, and bacterial infections. I just know Ericka gets them alot. Ericka has been on TOBI but I honestly dont think it really works for her. This last time the pulminologist took her off it. I got really scared. I am just happy when the drs tell me what she has instead of saying she got something than they dont know what it is.
The one thing they have told me is that because you have a direct line to the lungs and the more times you break the curcuit the more times they can get some bacterias in. How the heck can you not break the curcuit if you are suctioning them>>>???It is hard but I am sure it will be soo much better when they get off the trach. I will pray and hope that all goes well.

[Laurie]

I THINK I understand the difference between tracheitis, Psuedomonas, and bacterial infections. Here goes my version:

tracheitis = infection of the trachea (viral or bacterial) - in my experience, tracheitis in Evan caused lower sats, some coughing, and yellowish secretions. Once the infection spread into his lungs, we got wheezing, lots of coughing, lots of secretions.

bacterial infection = an infection, anywhere in the body, caused by bacteria

Psuedomonas = a particular kind of bacteria that is a problem for people with traches and compromised lungs and/or immune systems. Many antibiotics don't work on Psuedomonas - this is why inhaled tobramyacin is so often prescribed for an infection with Psuedomonas.

Also, a word of encouragement. Evan has gotten many fewer bacterial infections of his lungs since he was decannulated. We have not used tobramyacin at all since his trach was removed. He gets colds still, like all little kids, and because he has asthma due to his underlying lung problems, those colds can trigger asthma attacks. However, he has been much more resistant to bacterial infections, because the trach is not there to transmit bacteria to the lungs so directly. The nose and mouth are very important "filters" for bacteria, it turns out.