Routine Changes...Again!
Just when you think you have a glimpse into our life, we change it up. :)
As I mentioned in my prior posts, we sought out new CF care for Sienna. Our clinic was just not a good match for what we needed and expected for her care, so after discussing with her Pediatrician, we decided to move forward with meeting a different Pulmonologist and team to see if they could be a better fit for us. We had our first meeting earlier this month where we met the Pulmonologist, Social Worker, Respiratory Therapist, Nurse, and Dietitian and it went really well. Overall, the communication seemed easier with this group and the experience left us feeling comforted that we made the right move. So, we will now be going to Levine Children's Specialty Center for Sienna's quarterly clinic visits/check ins.
During this visit, we discussed the preventative care routine we were currently doing: two vest sessions + one neb 5% HTS (we hadn't made it to twice daily nebs yet). She asked us to get the second neb session in, and to try it out with 7% HTS if Sienna would tolerate it. Seven percent is really salty...saltier than ocean water! Sometimes it can cause wheezing or irritation, but if tolerated, it really helps wet the lungs and clear any mucus out. So we tried it out, and thankfully, Sienna seems to tolerate it just fine. It does make her cough a bit, but that just means it's working.
(Side note: I think normal saline is 1% sodium chloride. Hypertonic saline is offered with 3% sodium chloride or 7% sodium chloride. We were originally prescribed 5% HTS, which is a compounded solution of the 3% and 7%. Insurance doesn't cover compounded solutions, so instead of ordering through a specialty pharmacy for $50 a month, we opted to fill both a 3% and 7% prescription locally and mix the two solutions ourselves ($20/month). So we are happy to move to the 7% only now - much easier!)
In addition to changing her HTS solution, we have added in twice daily Albuterol before treatments. Instead of nebulizing the Albuterol like we've done in the past, Sienna is using an inhaler with Aero chamber. I love the inhaler! It's extremely quick (just two puffs, six breaths each), she doesn't mind it, and we aren't seeing the side effects from the medicine like we did when she nebbed it (hyperness).
So our new routine looks like this:
Morning: Albuterol through inhaler w/ chamber, followed by vest and nebulizer with 7% HTS (20 - 30 minutes)
Evening: Albuterol through inhaler w/ chamber, followed by vest and nebulizer with 7% HTS (20 - 30 minutes)
Overall, treatments have been running smoothly. Sienna needs someone to sit with her during each session to hold her neb cup, as she won't hold it herself, so whoever isn't doing treatment is usually getting everything ready for the day/night (meals, cleaning, etc.). Once Sienna starts holding her neb cup or wearing the mask, it will free us up to get more done during her treatment time which will be nice. Until then, we'll enjoy the extra cuddle time!
As I mentioned in my prior posts, we sought out new CF care for Sienna. Our clinic was just not a good match for what we needed and expected for her care, so after discussing with her Pediatrician, we decided to move forward with meeting a different Pulmonologist and team to see if they could be a better fit for us. We had our first meeting earlier this month where we met the Pulmonologist, Social Worker, Respiratory Therapist, Nurse, and Dietitian and it went really well. Overall, the communication seemed easier with this group and the experience left us feeling comforted that we made the right move. So, we will now be going to Levine Children's Specialty Center for Sienna's quarterly clinic visits/check ins.
During this visit, we discussed the preventative care routine we were currently doing: two vest sessions + one neb 5% HTS (we hadn't made it to twice daily nebs yet). She asked us to get the second neb session in, and to try it out with 7% HTS if Sienna would tolerate it. Seven percent is really salty...saltier than ocean water! Sometimes it can cause wheezing or irritation, but if tolerated, it really helps wet the lungs and clear any mucus out. So we tried it out, and thankfully, Sienna seems to tolerate it just fine. It does make her cough a bit, but that just means it's working.
(Side note: I think normal saline is 1% sodium chloride. Hypertonic saline is offered with 3% sodium chloride or 7% sodium chloride. We were originally prescribed 5% HTS, which is a compounded solution of the 3% and 7%. Insurance doesn't cover compounded solutions, so instead of ordering through a specialty pharmacy for $50 a month, we opted to fill both a 3% and 7% prescription locally and mix the two solutions ourselves ($20/month). So we are happy to move to the 7% only now - much easier!)
In addition to changing her HTS solution, we have added in twice daily Albuterol before treatments. Instead of nebulizing the Albuterol like we've done in the past, Sienna is using an inhaler with Aero chamber. I love the inhaler! It's extremely quick (just two puffs, six breaths each), she doesn't mind it, and we aren't seeing the side effects from the medicine like we did when she nebbed it (hyperness).
So our new routine looks like this:
Morning: Albuterol through inhaler w/ chamber, followed by vest and nebulizer with 7% HTS (20 - 30 minutes)
Evening: Albuterol through inhaler w/ chamber, followed by vest and nebulizer with 7% HTS (20 - 30 minutes)
Overall, treatments have been running smoothly. Sienna needs someone to sit with her during each session to hold her neb cup, as she won't hold it herself, so whoever isn't doing treatment is usually getting everything ready for the day/night (meals, cleaning, etc.). Once Sienna starts holding her neb cup or wearing the mask, it will free us up to get more done during her treatment time which will be nice. Until then, we'll enjoy the extra cuddle time!
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