Ayla has always been a go with the flow kid of girl when it comes to her treatments-always made me proud! I'm so lucky to have a kid who understands without understanding the reason she has to do these things to stay....."Strong & Healthy"
This is what our day looks like:
Wake up
Breakfast
Watch TV for an hour (let food settle)
Treatment #1 Albuterol 15 mins
Treatment # 2 Hypertonic Saline 20 mins
Airway Clearance Therapy 30 mins
Treatment # 3 TOBI (treats Psuedo) 20 mins
Lunch
Daytime Meds
Playtime/Rest-time
Dinner
bath
Treatment #1 Albuterol 15 mins
Treatment #2 Hypertonic Saline 20 mins
Airway Clearance Therapy 30 mins
Treatment #3 Pulmozyme 15 mins
Treatment #4 TOBI 20 mins
Night time meds
Sleep
We have yet to get into a good routine that puts her in bed at a decent hour. We started TOBI Saturday and since then she has been getting in bed around 10. So the morning starts later thus continuing the same late schedule we had the day before.
I know that we will find our groove-we will be on this schedule for the majority of 3 months to try and get rid of the Psuedo- so we will have ample time.
We are going to Disney in 2 weeks so this routine is going to be made even more interesting while we are there!
Ayla enjoys to watch movies, color pictures, play barbies and play-doh while doing her treatments. She really does have a great attitude about doing them most of the time.
~krista
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What type of compressor do you use?
ReplyDeleteAre you doing the vest in conjunction with the meds? We were always instructed to do the Albuterol (1st) and Pulmozyme (2nd) while we're doing the vest. Then when the 30 minutes is up we start the TOBI (which also runs us about 20 min). But, at least that way you're only looking at a 50-55 minute time period each morning and evening. Still a long time for little energetic girls, though :) I'm happy she has such a good attitude and I'm praying you get a good system down soon. What a fun trip to look forward to!!!
ReplyDeleteRonnie I have a Pari and the ones that come with the Phillips Resp machine....I do albuterol b4 i start her vest, then do HPTS/Pulm while her jacket is going and TOBI once her jacket is done...
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