Sophiesmum
New member
Well hey there!
Thought I'd better give a little update on Sophie for those of you wondering what has been going on.
Sophie had her bronchoscopy and 2 weeks of home IVs. Now I don't have the bronchoscopy report yet, we are at clinic next week so will be seeing it for the first time, however we were given a brief over view of what they saw whilst deep sea diving in Sophie's airways.
Things look good, really good was the enthusiastic speech we were given. They finally saw her TOF scarring and the doctor said he paused briefly mulling over what an earth it was and then realised. Not too over powering or sputum trap causing as we had feared so that is good news.
Basically her airways are looking fab still, minimal secretions and inflammation so we are very happy to take that and run. Although the full report will be more conclusive.
Obviously the mandatory cultures were taken, which often mean more than what is seen by the camera and is always the 'shows finale'. Things looking good can soon be masked over with an errant bug splashing around in the lungs having fun.
So let me just recap on Sophie's significant history. First bronchoscopy grew pseudomonas in all of the samples taken, Sophie was deemed colonised with pseudo around that point, then recently she cultured MRSA and pseudomonas at the same time causing a slight tizz and resulting in two lots of eradication treatments to try and get rid of the MRSA.
Prior to the bronchoscopy we had just finished eradication treatment number 2 and the bronchoscopy was to decide whether the penicillin squashing staph bitch had gone.
The culture results were strange, unfortunately MRSA is present and looks likely it's sticking around for the long haul but the strange thing is no pseudomonas was cultured anywhere in her lungs.
Now this does not mean it has gone but it may mean that MRSA is slightly superior and has taken over as queen bee in Sophs puffers causing MR P to retreat to undetectable numbers. I'm curious to see what next weeks cultures grow. Have her lung bugs evolved or are they preparing a huge onslaught of a war?
We have had one culture taken since the bronchoscopy and again no show for Mr P. CF friends have told me they know of other people who have cultured MRSA and it has gone on to kill pseudomonas off completely. This poses the question, is MRSA the black widow spider of the CF bug world?
Only time is going to tell but as long as it keeps Mr P's numbers down to a minimum then I'll sleep a little easier. Sophie is incredibly well at the moment and has been for a good few months now, so Ms M is giving her a break and lying quite dormant down in her lungs.
The IVs went nice and smoothly and it was so much easier and less time consuming using the part pre-mixed drugs. We couldn't go totally pre-mixed as Sophs aztreonam doesn't come in pre-mixed syringes. You can get it in the eclipse balls but it takes 30 Min's-60 Min's to give and we prefer to give it as a bolus over 5 minutes.
Click link to view pictures and main blog.
http://lungsbehavingbadly.blogspot.co.uk/2012/09/evolution.html?m=1
In the last picture you can also spot Sophie's paediasure. Yep she is still drinking one per day which is fantastic. I have some super top secret news to share with you soon, but for now I'll have to keep you on the edge of your seats in suspense.
Lots of blogs and updates to follow so stay tuned, I've been bitten by the blogging bug again.
Take care all!
x
Thought I'd better give a little update on Sophie for those of you wondering what has been going on.
Sophie had her bronchoscopy and 2 weeks of home IVs. Now I don't have the bronchoscopy report yet, we are at clinic next week so will be seeing it for the first time, however we were given a brief over view of what they saw whilst deep sea diving in Sophie's airways.
Things look good, really good was the enthusiastic speech we were given. They finally saw her TOF scarring and the doctor said he paused briefly mulling over what an earth it was and then realised. Not too over powering or sputum trap causing as we had feared so that is good news.
Basically her airways are looking fab still, minimal secretions and inflammation so we are very happy to take that and run. Although the full report will be more conclusive.
Obviously the mandatory cultures were taken, which often mean more than what is seen by the camera and is always the 'shows finale'. Things looking good can soon be masked over with an errant bug splashing around in the lungs having fun.
So let me just recap on Sophie's significant history. First bronchoscopy grew pseudomonas in all of the samples taken, Sophie was deemed colonised with pseudo around that point, then recently she cultured MRSA and pseudomonas at the same time causing a slight tizz and resulting in two lots of eradication treatments to try and get rid of the MRSA.
Prior to the bronchoscopy we had just finished eradication treatment number 2 and the bronchoscopy was to decide whether the penicillin squashing staph bitch had gone.
The culture results were strange, unfortunately MRSA is present and looks likely it's sticking around for the long haul but the strange thing is no pseudomonas was cultured anywhere in her lungs.
Now this does not mean it has gone but it may mean that MRSA is slightly superior and has taken over as queen bee in Sophs puffers causing MR P to retreat to undetectable numbers. I'm curious to see what next weeks cultures grow. Have her lung bugs evolved or are they preparing a huge onslaught of a war?
We have had one culture taken since the bronchoscopy and again no show for Mr P. CF friends have told me they know of other people who have cultured MRSA and it has gone on to kill pseudomonas off completely. This poses the question, is MRSA the black widow spider of the CF bug world?
Only time is going to tell but as long as it keeps Mr P's numbers down to a minimum then I'll sleep a little easier. Sophie is incredibly well at the moment and has been for a good few months now, so Ms M is giving her a break and lying quite dormant down in her lungs.
The IVs went nice and smoothly and it was so much easier and less time consuming using the part pre-mixed drugs. We couldn't go totally pre-mixed as Sophs aztreonam doesn't come in pre-mixed syringes. You can get it in the eclipse balls but it takes 30 Min's-60 Min's to give and we prefer to give it as a bolus over 5 minutes.
Click link to view pictures and main blog.
http://lungsbehavingbadly.blogspot.co.uk/2012/09/evolution.html?m=1
In the last picture you can also spot Sophie's paediasure. Yep she is still drinking one per day which is fantastic. I have some super top secret news to share with you soon, but for now I'll have to keep you on the edge of your seats in suspense.
Lots of blogs and updates to follow so stay tuned, I've been bitten by the blogging bug again.
Take care all!
x
