Tobi has been part of our daily routine for almost 2 consecutive months now, only6 days shy. For any newcomers, Tobi is an antibiotic that Nathan has been taking in the inhaled form to eradicate the bacteria in his lungs, namely pseudomonas (aeruginosa).
Tobi is typically taken on a “28 days on, 28 days off” schedule. Nathan took Tobi for the month of February only to continue to regrow pseudomonas and a few other swampy bacteria creatures in his sputem culture.
Nathan started up again on Tobi in May and continued to take it during June. Tobi is not fun, it is exhausting for me, my husband, and Nathan but I will continue to administer the Tobi as recommended Nathan’s team of doctors.
Each time Nathan goes to a clinic visit they obtain a sputum culture. The respiratory tech inserts a swab into his mouth and fairly deep into his throat until he gags coughs up a sample of the mucous residing in his lungs. We should receive the results of today’s sputum culture within a few days.
If the culture does not grow any bacteria, Nathan will have a one month reprieve from taking Tobi and so will we. Then he will be on the normal Toby schedule “28 days on, 28 days off” until he has 3 normal, non bacteria cultures in a row.
If the culture does grow bacteria, which I have a sneaky suspicion it will, the doctor is “not quite sure what he will do”. He will either proceed with yet another month of inhaled Tobi at home or 7-10 days of intravenous antibiotic at the hospital. Dr. A wants to eradicate the pseudomonas and I trust his decision. But…
…I am scared.
Other than all the bacteria and the antibiotics, he has put on a little weight. He is still between the 25th and 50th percentile but getting closer to the 50th. Yippee, I thank God that Nathan has a tremendous appetite. I will keep the food and enzymes coming. But in the meantime, I am still scared about Nathan’s first treatment of intravenous antibiotics, which may be sooner rather than later.
After having been at the CF clinic for hours I was exhausted and still had to drive home. An hour long car ride nap re-energized my turbo charged little munchkin. I decided it was best to enjoy some fresh air with Nathan confined to the deck, since he was full of energy and I was completely out of energy. He decided to climb into his pool while still fully clothed, again.
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6 comments
My eyes filed with tears as I read this post. I am so sorry that you are struggling with this. I don't understand CF, but I do understand wnating your baby to stay out of the hospital and being scared when you know they may have to go in. I will keep praying. God bless.
I will pray that the tests come back with Great results! You all deserve it!… lets get the lil ones together next week!
Sorry to hear about all of your expieriences with the pseudomonas… so far we have been very blessed to pass all our swab tests… Your little guy is so little, just curious how old he was when he first tested postitive for the bateria??? If you dont mind me asking… Praying your results come back good….
Nathan just go me giggling when I saw him in the pool…fully clothed. It is the simple things that put a smile on this face
Nathan is such a fighter and continues to fight CF head on. Yes he may have to take daily meds to keep him going, but he is definatly movin' and grovin' each and every day.
When I read you blog updates, I am AMAZED at your strength and endurance through fighting CF. No you don't have it, but your fight for Nathan's best care is AMAZING!
Hang in there!!!
~Elyse
I was so nervouse about the first IV meds too. Maddie had hers at 6 months and we saw major improvements. I just knew we were going to get on that slippery slope of being in the hospital all.the.time. But it did wonders and she hasn't been on inhaled TOBI since and she is 5 and half now!! She has been in the hospital twice in the last year but those were both very good visits as well. I know it is scary giving your kids all those meds but for CF kids the alternative is worse. I will be thinking about you! I hope his cultures come back great!
Amy
My son (also with CF) had to be in the hospital for a tune up before his sinus surgeries. He was close to 2 years old and I was scared too, but it actually was not too bad and they did really help.