Update: They have started us on TOBI. We had some extra from when Ben cultured pseudo at 3 months. If his culture comes back negative for it, we will stop. Until then we will do it twice a day for 28 days then reculture.
Good news all around!!
Ben’s chest x-ray came back all clear! They didn’t see any inflammation, mucus buildup or haziness. VERY good news. This means we just keep doing what we are doing and he will have another one done in a year since this x-ray looks so good.
His blood work came back clear also. His vitamin levels won’t be in for a couple days but we pray those come back okay. His blood work did show a slight higher level in liver function but nothing for us to worry about now. The pulmonary nurse thinks it could be from what he ate that morning so we will recheck those levels in a couple months.
The only bad news is that they think his cough maybe pseudomonas. Pseudomonas is a bacteria found in the air or soil, that can be very harmful for people with CF. If left untreated, it can cause inflammation and infection leading to damage in the lungs. Ben’s throat culture, due back on Thursday or Friday, will tell us if he is growing this in his lungs. If so, we will start TOBI, an inhaled antibiotic. He will get this twice a day through a nebulizer for a month to three months.
We won’t know his culture results for a few days so for now I am basking in the glow of his wonderful lab and x-ray results. Thank you all for your prayers; the Lord hears them and is blessing us!!
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I'm so happy that the overall clinic visit went well...YAY! He is such a brave little boy. Praying for clear cultures, but know the TOBI will help clear up that pseudomonas. I'm currently taking it as well. I do the one month on, one month off cycle. Praying the little man's cough is MUCH better real soon and he continues to stay "healthy."
ReplyDeleteOh..and I was going to ask or mention something regarding the Bactrim. I noticed you mentioned exploding diapers while on this medicine. Has the doc ever mentioned the drug Dapsone? It's an equivalent of Bactrim and is what people who are allergic take. As far as I know it provides the same results (maybe slightly less protection, but very minimal and shouldn't really make a difference). It carries less side effects than the Bactrim. The Bactrim was giving me stomach trouble and also caused me to lose my appetite, so my doc switched me over to Dapson. Just a thought...they may not even have an infant Dapsone dose...who knows.