By a fluke we got Sebastian into the pulmonologist today and found out my poor baby has been harboring two separate bacterias in his lungs/airway for the past 3 months. :o( I am so angry I could spit nails ... a few shards of glass boot !
When we originally called the pulmonologist in mid April and about the super stinky (seemingly happened overnight) red stoma, yellow secretions, hacking, runny nose and eyes and all around grumpiness which those who know him know this is a big sign something is amiss. Being one of the only two ped pulmonologist locally , both of which are in the same office, they were understandably booked up. They called in the antibiotics for him and armed with a refrigerator of yogurt to counter act those yucky tummy problems and inevitable yeast flare up we started on it.
By early May we were at the pediatrician with it , they with ordered a trach culture (swab) and for some reason sent us to the local children's hospital to get it. The lab techs at the children's hospital said they didn't know how to do it ( yeah...I can't believe it either...) so they wanted us to take him into the ER to have someone in there do it. Like I am really going to take my already immune suppressed kid with a trach (aka. a hole that leads straight to his lungs) in to the germy ER for something as utterly mundane as a trach swab. So I take the kit and did the culture myself to get my kid out of the place as quick as possible. A few days passes and when it was time for the results , viola , no one could find them but after enough grouching she finally caves and gives me some antibiotics for the kid, the only the same ones that the pulm put him on despite not working the first time and regardless of me arguing over the uselessness of it.
Two weeks or so pass we return to the ped. this time we see the Nurse Practitioner and she put Sebastian on the same antibiotics but at a higher dose since it seems to knock the illness out for a week or so , logic is the medicine is working but he just needs more of it.
Yet another two weeks pass , nasty yeast flare up around the trach but the hacking and yellow secretions gone. The following week yeast almost under control... then the smell and yellow secretions began flaring up...anyone else seeing a pattern here ?!?!?!?
Back to the Ped's office again.. this round we get one of the other peds in the group who does a trach swab right then and there himself to send off and has has blood drawn to test in the office before we leave. Turns out that , shock me shock me , Sebastian's white count is elevated so after a wonderful exchange this ped trusts I actually know my kid better then anyone and despite not wanting too, gives me a prescription for a new antibiotic. This one works a bit better but also bombs in the end.
This is what has been going on for the past months, during this time we had a blood test, two trach swabs, three rounds of one type of broad spectrum antibiotics , a fourth different antibiotic (all oral) , added more nebulizer treatments, extra pulmicort, two different types of yeast treatments for the countless flare-ups, played with what we did trach care with ( the 1/3 peroxide water solution, just water, Eucerin and water mix) and changing the trach out at the first sign of redness around the stoma. That's not to mention having to cancel his T&A surgery , prescious lost hours of therapy he missed, miserable days with a grumpy , yucky feeling little guy and long nights of little sleep and lots of frightening coughing added into the mix.
After all this we got the pulm today who goes through the normal gamut of things then leaves the room to see if they can somehow access his test results. Less then ten mintues later they return and low and behold , in his file is the results of the culture and it showed he has had these two bacterias hanging out in his airway since friggin' APRIL !!!!! Can you even fathom how ticked off I was ?
Unfortunately I can not recall the exact names of the strains but the pulm said it was just normal junk that our lovely little trach kidlets get colonized with, nothing major to fret over and put Sebastian on a month of inhaled antibiotics. If needed we will continue in on a rolling schedule throughout winter.
After a few moments it occurred to me that if it is just on of those normal trach things shouldn't the one of the three people we saw at the pediatricians office at least had a clue. Now, don't get me wrong, I am sure they don't deal with many trachs there but I feel if they are taking on the responsibility of it they should at least familiarize their selves with it.
I inquired if the peds should have picked up on this and from what I understand this was a pretty basic ,open and shut kind of thing. *sigh* So , now I am feeling bad my poor kid ran around more or less sick for the better part of three months for no good reason....
Also the pulm is guessing this all started out simply enough.. Sebastian caught a little bug which , like most little bugs caused extra secretions and created a nice little breeding grounds for said bacterias to flourish. When given antibiotic #1 it just treated one of the bacterias and caused a yeast infection which can also knock down the immune system and that allows lucky bachelor #2 ...I mean bacteria # 2 to grow even more all the while never being treated. Since he had bacteria #2 still thriving , as well as normal spring allergies to help provide a germ breeding ground it then helped bacteria #1 to quickly regenerate..... Everyone still with me ??
On a fun note we got to visit Sebastian's NICU nurses from both hospitals he stayed at and showing off his silliness and smiles all the way. I also got to meet one of Sebastian's long time blog readers for the first time, she now works at one of the NICUs he was at, it was a wonderful moment.
Also went grocery shopping and Sebastian rode around in true and apparently very fun style !
When we originally called the pulmonologist in mid April and about the super stinky (seemingly happened overnight) red stoma, yellow secretions, hacking, runny nose and eyes and all around grumpiness which those who know him know this is a big sign something is amiss. Being one of the only two ped pulmonologist locally , both of which are in the same office, they were understandably booked up. They called in the antibiotics for him and armed with a refrigerator of yogurt to counter act those yucky tummy problems and inevitable yeast flare up we started on it.
By early May we were at the pediatrician with it , they with ordered a trach culture (swab) and for some reason sent us to the local children's hospital to get it. The lab techs at the children's hospital said they didn't know how to do it ( yeah...I can't believe it either...) so they wanted us to take him into the ER to have someone in there do it. Like I am really going to take my already immune suppressed kid with a trach (aka. a hole that leads straight to his lungs) in to the germy ER for something as utterly mundane as a trach swab. So I take the kit and did the culture myself to get my kid out of the place as quick as possible. A few days passes and when it was time for the results , viola , no one could find them but after enough grouching she finally caves and gives me some antibiotics for the kid, the only the same ones that the pulm put him on despite not working the first time and regardless of me arguing over the uselessness of it.
Two weeks or so pass we return to the ped. this time we see the Nurse Practitioner and she put Sebastian on the same antibiotics but at a higher dose since it seems to knock the illness out for a week or so , logic is the medicine is working but he just needs more of it.
Yet another two weeks pass , nasty yeast flare up around the trach but the hacking and yellow secretions gone. The following week yeast almost under control... then the smell and yellow secretions began flaring up...anyone else seeing a pattern here ?!?!?!?
Back to the Ped's office again.. this round we get one of the other peds in the group who does a trach swab right then and there himself to send off and has has blood drawn to test in the office before we leave. Turns out that , shock me shock me , Sebastian's white count is elevated so after a wonderful exchange this ped trusts I actually know my kid better then anyone and despite not wanting too, gives me a prescription for a new antibiotic. This one works a bit better but also bombs in the end.
This is what has been going on for the past months, during this time we had a blood test, two trach swabs, three rounds of one type of broad spectrum antibiotics , a fourth different antibiotic (all oral) , added more nebulizer treatments, extra pulmicort, two different types of yeast treatments for the countless flare-ups, played with what we did trach care with ( the 1/3 peroxide water solution, just water, Eucerin and water mix) and changing the trach out at the first sign of redness around the stoma. That's not to mention having to cancel his T&A surgery , prescious lost hours of therapy he missed, miserable days with a grumpy , yucky feeling little guy and long nights of little sleep and lots of frightening coughing added into the mix.
After all this we got the pulm today who goes through the normal gamut of things then leaves the room to see if they can somehow access his test results. Less then ten mintues later they return and low and behold , in his file is the results of the culture and it showed he has had these two bacterias hanging out in his airway since friggin' APRIL !!!!! Can you even fathom how ticked off I was ?
Unfortunately I can not recall the exact names of the strains but the pulm said it was just normal junk that our lovely little trach kidlets get colonized with, nothing major to fret over and put Sebastian on a month of inhaled antibiotics. If needed we will continue in on a rolling schedule throughout winter.
After a few moments it occurred to me that if it is just on of those normal trach things shouldn't the one of the three people we saw at the pediatricians office at least had a clue. Now, don't get me wrong, I am sure they don't deal with many trachs there but I feel if they are taking on the responsibility of it they should at least familiarize their selves with it.
I inquired if the peds should have picked up on this and from what I understand this was a pretty basic ,open and shut kind of thing. *sigh* So , now I am feeling bad my poor kid ran around more or less sick for the better part of three months for no good reason....
Also the pulm is guessing this all started out simply enough.. Sebastian caught a little bug which , like most little bugs caused extra secretions and created a nice little breeding grounds for said bacterias to flourish. When given antibiotic #1 it just treated one of the bacterias and caused a yeast infection which can also knock down the immune system and that allows lucky bachelor #2 ...I mean bacteria # 2 to grow even more all the while never being treated. Since he had bacteria #2 still thriving , as well as normal spring allergies to help provide a germ breeding ground it then helped bacteria #1 to quickly regenerate..... Everyone still with me ??
On a fun note we got to visit Sebastian's NICU nurses from both hospitals he stayed at and showing off his silliness and smiles all the way. I also got to meet one of Sebastian's long time blog readers for the first time, she now works at one of the NICUs he was at, it was a wonderful moment.
Also went grocery shopping and Sebastian rode around in true and apparently very fun style !
2 comments:
Oh my! I can't even believe all that. Yeah, I'd be pretty pissed about all that. What a lot of wasted energy for nothing. Sometimes we have to prove that mama knows best don't we? Hopefully they'll take it more seriously next time. At least now you've got ammo. You can always say "Last time...."
I have a feeling it was psuedomonis (speeling is off I'm sure) Elizabeth use to get it all the time. We actually did tobi neb 21 days on, 21 days off and it was SO my friend!!!! It worked well. She was colonized with it bad. Since the trach has been out she has been great as far as that bug, not so much on others though.
Her ped luckily is VERY good and a former NICU fellow and deals with lots of special need kidlets, so I am lucky. I hope you have better luck in the future!
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