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Hello, Hello

We got Carlyn into the respiratory disease specialist this morning. Dr. Chipps (who is a really odd old man but a genius as every medical journal I have come across in my little research today has his name associated with it). The appointment went like this:

A nurse completed a series of skin tests to make sure she has no allergies (they prick some oils onto her back and waited for 20 minutes to see any reaction) result, NO allergies!!

Dr. Chipps listened to her and reconfirmed that she defiantly has two infected ears, went over all the medications she was and is currently taking etc.

Told us to stop all medication with the exception of her newest antibiotic since she has infected ears. Since we are medicating her and it is doing nothing we need to stop. We have been giving Carlyn all of this inhaled medications which seemed to be doing nothing, AND the doc. confirmed that, yes, kids with certain respiratory diseases will not have any improvement by using these so we can stop killing ourselves and making her miserable every 4 hours.

The next avenue to explore:
He said that Carlyn may have a disease known as PBB (means basically that you get chronic bacterial infections and Staph. pneumoniae is one of the most common bacteria associated) It is apparently misdiagnosed initially a lot by doctors for asthma, but it has nothing to do with asthma. The little tid-bit of info we have on PBB says that further studies of immune system abnormalities in these children are needed. We also discussed that on occasion this can be treated with a long series of antibiotics but clearly this is not the case for our child.

The way they will test for this is by sedating Carlyn with some intravenous medication and numb her throat/lungs then use an endoscope to visually examine her lungs and draw some tissue for assessment. They will be looking for an intense neutrophilic airway inflammatory response. That is basically fancy for: sticking a tube into her lungs to see what is going on more clearly than the x-rays have and removing tissue to see if it looks abnormal.
This is usually an outpatient procedure, so that's another plus.
I honestly know nothing about this little potential disease and the doctor is moving one step at a time, doing this first and if there is a negative result we'll move onto the next possibility. We will not be completing the brochioscopy for two weeks because she cannot be on any medications for at least 7 days before they do this test. We didn't discuss any treatment options for this particular possibility since we are not certain this is what she has, it's just what he wants to explore first.

The machine that tests for CF is currently broken, random, I know! But there are only two approved CF testing centers in Nor. Cal and the one that is near us is not working so we'll still have her tested for CF but it will not be until May. She is not exhibiting digestive issues which usually come hand in hand with the desease and the fact that her preliminary screening at birth was negative is making the doctor as he said "90% sure that this is not what we're dealing with" but we do need to test her to rule it out completely.

We are now on our way to the lab again for another series of blood tests the new doc. is running to check for other random things.



For me and Brett we are letting go of the "fix it now" mentality as we have now realized this is going to be a long process and that Carlyn is in the right hands. So we are just taking it day by day and keeping her happy. It could be so much worse, we know that. We get to stay home and kiss our baby every day, that in itself is a blessing we do not take for granted.