Thursday, December 6, 2012

First bronchoscopy

CF seems to be rearing its ugly head. Kelsie has now had a cough for 8 weeks now. It is also the first cough she has ever had, but she just can't seem to get over it. It started out with a fever and a couple of coughs here and there. That went on for about a week and then her doctor decided to start her on and antibiotic (Augmentin) for 20 days. She continued to cough the entire time and the cough even worsened during that time. We saw the doctor again about halfway through that course of antibiotics and she thought she looked great and just suspected that she was hit with 2 respiratory viruses back to back. She advised we continue with the antibiotic regimen and also started a nasal spray to help with any nasal congestion/allergic etiology. We did that for a couple of weeks, but the cough persisted. The amount has varied but there definitely hasn't been a day without cough since this all started.

So about a week and a half ago, I talked to her doctor about her peristant cough and she wanted to start a different antibiotic and talked about the possibility of doing a bronchoscopy and admitting her if the cough did not improve while taking the antibiotic. The cough has since been waxing and waning. Some days the cough is very minimal (maybe 1-2x), but other days it has been much more. The cough seemed to be better overall, especially in the quality (not as wet and junky). It was better over the weekend and I thought it was going away, but 2 days ago she coughed 12 times. Then only 7x yesterday. We talked to her doctor last night and she said she was still on the fence about whether or not to proceed with the bronch. After much discussion, we decided to hold off on the bronch, and do hyptertonic saline (an inhaled therapy) instead. This is like really salty water that she would breathe in through a breathing machine and it would help her cough out secretions. Her doctor and I both thought this was a good middle ground and a good option to avoid the more invasive procedures. We also thought it would give this cough more time to settle out if it were viral or the result of sinus drainage. However, this morning she woke up with a lot of cough again. She has probably coughed 25x today and thats the most I've heard in several weeks. :/ It also sounds junky again too and has almost gagged her a few times. I broke down a couple of times realizing that this bronchoscopy procedure is now inevitable and necessary to make sure infection is not growing in her lungs.

Prior to the bronch, she will have PFTs (pulmonary function test) which measures how well her lungs are working. She has had two of these before and she will get these routinely for the rest of her life. Since she is still too young to breathe on demand and show how hard she can breathe, they have to sedate her for this test, put her in a special box, force air in, and measure how well her lungs are doing. This isn't a bad test, its just the sedation that is the hardest part. So she will have this in the morning around 9am, then while she is still sedated, they will move her to the bronch lab where they will put her into an even deeper sleep, but she will still be breathing on her own.  During the bronchoscopy, they will go down and look into her airways for secretions. We know that kids with CF have more secretions and have a harder time getting rid of them. So this poses this risk of bacteria growing, causing pneumonia and inflammation of the airways.  So in kids with CF, it is sometimes necessary for them to go in and look closely at all the small spaces in the lower airways to make sure there isn't any infection.

If they do find secretions in her lower airways tomorrow, they will take samples and culture it to see exactly what type of bacteria it is growing. They will then go ahead and put in a PICC line(peripherally inserted central catheter), which is long catheter that is inserted in a vein in her arm and ends in a large vein near her heart. This will be there to allow her to get long term IV antibiotics if needed without having to worry about getting multiple IVs and doing damage to her veins. It ensures good IV access so that she can get the stronger IV antibiotics if the cultures show they are needed.

So at this point things are still up in the air. She will definitely get the PFTs and bronch in the morning. If both look good, they will send her home. If they find secretions they will take cultures, put in the PICC, then admit her, and start IV antibiotics until the cultures come back. And the course that follows will just depend on what they find. So please keep her in your prayers and lets all hope that her lungs will look clear and that this cough is just coming from some post-nasal drainage from a sinus infection or virus. Which is also a very real possibility since people with CF are also at a greater risk of sinus infections. They will also look at her sinuses while doing the bronch as well so we will know if thats the source of the inefction as well.

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