Airway clearance is a major part of CF care and maintenance. There are various ways that patients and their caregivers can administer the clearance therapies, and some of the techniques used can vary by country. Some techniques can be done by the patient (if they’re old enough to take charge of their care), while others require someone else to assist them.
The whole point of airway clearance is to loosen and move the abnormally thick, sticky mucus out of the lungs so patients can (hopefully) breathe better. Getting all of the mucus out can also help reduce the severity of lung infections (cff.org).
One of the first airway clearance techniques parents of infants use on their child after diagnosis is manual chest physiotherapy, or CPT. The parent or caregiver can use a cupped hand or a special percussion cup to clap over the lungs in specific zones for a set amount of time. This is the method we used with Judith for almost 2 years until she was big enough to qualify for another method of airway clearance.
In the US, inflatable vests are a popular and common form of airway clearance, called High-frequency chest wall oscillation, or HFCWO. I see 3 brands mentioned most often among other CF parents: The Vest by Hill Rom, Smartvest by Electromed, and the InCourage by RespirTech. The patient puts on a cloth vest that has an inflatable bladder inside, connects the vest to a generator with a hose (or 2 hoses depending on the system), then starts the generator for the specific amount of time that the CF team recommends. As patients get older, they will often let the vest run for a few minutes, set the program to automatically pause so they can huff cough to expel the loosened mucus, and repeat for the duration of the treatment. Judith isn’t old enough to understand how to huff cough yet, so her treatments run straight through. Our team wants her to do 30 minutes twice a day, which seems to fit with the average of 20-30 minutes that I’ve heard about from other CF parents. Vest systems are hard to come by for patients outside of the US because other countries often will not pay for the systems, so if a patient wants one they often have to pay out of pocket for a new system or a used system. There is some debate about whether or not the vest systems do a better job than manual CPT or other methods.
Another technique that older patients can use is Oscillating Positive Expiratory Pressure (Oscillating PEP). To do Oscillating PEP, the patient blows into a device that then vibrates the large and small airways to help loosen the mucus (cff.org). 2 devices I’ve heard mentioned frequently for Oscillating PEP are the Flutter and Acapella, but there are other brands available.
During normal treatment plans, most patients perform airway clearance twice a day, but some may do it more frequently depending on their individual case. During sick plan, patients are often performing airway clearance at least 3-4 times a day to help get rid of excess mucus that’s building up, and to hopefully keep more serious infections from setting up camp in the lungs. Airway clearance can be pretty time consuming, particularly during sick plan, but it’s necessary to do it regularly.
There are other forms of airway clearance that I didn’t cover, and if you would like to read more about them, you can find them by following the source link at the bottom of this post.
Source: http://www.cff.org/treatments/therapies/respiratory/airwayclearance/
Showing posts with label CPT. Show all posts
Showing posts with label CPT. Show all posts
Friday, May 9, 2014
Monday, May 5, 2014
A Look Into Our Daily Routine
The CF team is one part of the core care facilitators for CF patients. The patients themselves and their parents/caregivers or spouse/significant others are the other part of that core. Compliance is huge for patients to be able to stay as healthy as they possibly can, to try to ward off as many bigger complications for as long as they can, and to try to live a long, full life.
Compliance can be challenging at all stages of a CF patient’s life. One benefit I recently discovered is being able to get a glimpse into potential future battles we may have with Judith; I’m part of a Facebook group for CF parents, and the children’s ages vary greatly. I’ll often read through posts about the challenges in dealing with teens, and file the tips away in the back of my mind in case we have the same problems in the future. Of course there are challenges with kids Judith’s age as well, and believe me there are days when I want to pull my hair out trying to keep her compliant when she is trying her hardest to get out of doing a treatment!
One thing that helps keep us in compliance is sticking with a solid routine. Our daily routine is strict, but also allows for wiggle room depending on what’s going on that day. A general day for us looks like this:
Wake up, have a can of Pediasure in a straw cup, mixed with the day’s dose of Miralax
Random “get ready for the day” stuff that everyone does
Have breakfast with another can of Pediasure; take vitamin
Play time for about 60-90 minutes
Vest, Albuterol
Snack and more play time or other activities
Lunch with another can of Pediasure
Nap
Yet another can of Pediasure, then about 30 minutes of play time
Vest, Albuterol
Dinner
Bath, bedtime routine, bed
Most of that is nothing out of the ordinary for a preschooler, and in fact the majority of Judith’s day consists of very typical activities. The differences are in the treatments. We’re fortunate because she is not on as many medicines as a lot of other CF patients, so it significantly cuts back on treatment times. However, The Vest alone takes a full hour out of each and every day, and that’s when she isn’t sick. Sometimes it can be hard and even annoying trying to plan appointments and activities around her treatment times and accounting for them, but it’s something you get used to. Now, when Judith’s on “sick plan,” things are even trickier. Treatments will at least double, which means she’s spending a good 2 hours every day on her Vest, and taking puffs of her Albuterol every 4 hours (again, though, the time is significantly less than it is for some patients because we use the inhaler with her, and don’t nebulize it). Antibiotics are also added, which can often be a good 15 minute battle depending on what form they come in. If she has a pseudomonas infection, TOBI would add an additional 40 minutes (approximately) to the plan. I also know that once we add hypertonic saline and pulmozyme to her daily meds, treatment times are going to go up even more.
It’s a lot, and it’s overwhelming, especially if she’s sick. We’re hoping that by fostering good compliance strategies now, it will help with the compliance battles we may end up facing as she gets older.
Compliance can be challenging at all stages of a CF patient’s life. One benefit I recently discovered is being able to get a glimpse into potential future battles we may have with Judith; I’m part of a Facebook group for CF parents, and the children’s ages vary greatly. I’ll often read through posts about the challenges in dealing with teens, and file the tips away in the back of my mind in case we have the same problems in the future. Of course there are challenges with kids Judith’s age as well, and believe me there are days when I want to pull my hair out trying to keep her compliant when she is trying her hardest to get out of doing a treatment!
One thing that helps keep us in compliance is sticking with a solid routine. Our daily routine is strict, but also allows for wiggle room depending on what’s going on that day. A general day for us looks like this:
Wake up, have a can of Pediasure in a straw cup, mixed with the day’s dose of Miralax
Random “get ready for the day” stuff that everyone does
Have breakfast with another can of Pediasure; take vitamin
Play time for about 60-90 minutes
Vest, Albuterol
Snack and more play time or other activities
Lunch with another can of Pediasure
Nap
Yet another can of Pediasure, then about 30 minutes of play time
Vest, Albuterol
Dinner
Bath, bedtime routine, bed
Most of that is nothing out of the ordinary for a preschooler, and in fact the majority of Judith’s day consists of very typical activities. The differences are in the treatments. We’re fortunate because she is not on as many medicines as a lot of other CF patients, so it significantly cuts back on treatment times. However, The Vest alone takes a full hour out of each and every day, and that’s when she isn’t sick. Sometimes it can be hard and even annoying trying to plan appointments and activities around her treatment times and accounting for them, but it’s something you get used to. Now, when Judith’s on “sick plan,” things are even trickier. Treatments will at least double, which means she’s spending a good 2 hours every day on her Vest, and taking puffs of her Albuterol every 4 hours (again, though, the time is significantly less than it is for some patients because we use the inhaler with her, and don’t nebulize it). Antibiotics are also added, which can often be a good 15 minute battle depending on what form they come in. If she has a pseudomonas infection, TOBI would add an additional 40 minutes (approximately) to the plan. I also know that once we add hypertonic saline and pulmozyme to her daily meds, treatment times are going to go up even more.
It’s a lot, and it’s overwhelming, especially if she’s sick. We’re hoping that by fostering good compliance strategies now, it will help with the compliance battles we may end up facing as she gets older.
Wednesday, July 25, 2012
It's Ordered!
Much to my surprise, I received a phone call from Electromed, the makers of the Smart Vest, this morning while I was dropping off Judith's cup o' poo at the lab. Her vest was 1 step away from being ordered and shipped - all I had to do was review insurance info, health info, etc., with the representative! Her vest is expected to be here early next week, and a rep will come out and teach us how to use it. Woo hoo!
Sunday, January 29, 2012
Ouch Update (haha)
Our biting situation is getting a bit better. I'm working on creating an arsenal of supplies to keep handy for entertainment purposes (apparently Anderson Cooper isn't entertainment enough during those morning CPT times), so we'll see what they can do to help turn things around. Videos and whatnot will probably become therapy treats around here very quickly.
Judith made an attempt to bite my dad last Thursday when he did her CPT (his work schedule finally worked out so I could actually accept one of the teaching days I got called for), but he was able to avoid those little razors. She started to go after my arm once on Friday, but for some reason stopped. And after seeing what I saw this afternoon, I may have a reasoning for a small part of the problem: tooth #8 is queued up and ready to rupture through the gums very, very soon. We're talking a full-blown pit where that sucker will make it's appearance within the next 24-36 hours (based off of her pattern from when I actually notice the pit). And as a side note, if you never noticed this phenomenon while your child is teething, it's kind of freaky to see. There's nothing more bizarre than seeing a small hole in your child's gum, then seeing the first portions of a tooth poking through a day later.
Anyway, we currently have 8 small bottles of bubbles that were purchased yesterday at Wal-Mart (4 packs of which will make their way to my parents' house so they have some there), and I want to try using those as an extra treat - the nurses at the CF Clinic will sometimes use bubbles to distract Judith when they're taking her vitals, and she really seemed to enjoy them. Fingers crossed that the novelty doesn't wear off too quickly, but if she's anything like me that novelty will never wear off.
We'll see how this goes - with any luck, she'll keep her interest in these new things long enough to give me time to think of some backups when stuff becomes stale.
Judith made an attempt to bite my dad last Thursday when he did her CPT (his work schedule finally worked out so I could actually accept one of the teaching days I got called for), but he was able to avoid those little razors. She started to go after my arm once on Friday, but for some reason stopped. And after seeing what I saw this afternoon, I may have a reasoning for a small part of the problem: tooth #8 is queued up and ready to rupture through the gums very, very soon. We're talking a full-blown pit where that sucker will make it's appearance within the next 24-36 hours (based off of her pattern from when I actually notice the pit). And as a side note, if you never noticed this phenomenon while your child is teething, it's kind of freaky to see. There's nothing more bizarre than seeing a small hole in your child's gum, then seeing the first portions of a tooth poking through a day later.
Anyway, we currently have 8 small bottles of bubbles that were purchased yesterday at Wal-Mart (4 packs of which will make their way to my parents' house so they have some there), and I want to try using those as an extra treat - the nurses at the CF Clinic will sometimes use bubbles to distract Judith when they're taking her vitals, and she really seemed to enjoy them. Fingers crossed that the novelty doesn't wear off too quickly, but if she's anything like me that novelty will never wear off.
We'll see how this goes - with any luck, she'll keep her interest in these new things long enough to give me time to think of some backups when stuff becomes stale.
Monday, January 23, 2012
Ouch
There has to be a better way to accomplish things while we're waiting for miss peanut to gain more weight.
I'm talking about her CPT. Doing this stuff manually is driving me insane! On top of the incessant escape tactics Judith keeps trying, she is now biting my arms during therapies. The only time she doesn't do this? When she's completely sound asleep... at about 8:30 at night. It's so damned easy to do it then, for obvious reasons, but any time she's awake it's an all-out battle.
I am at my wit's end trying to figure out new ways to keep her occupied for the entire 24 minutes it takes us to do her CPT. Toys to chew on are boring her. The dogs and the Weather Channel don't even entertain her anymore.
I don't know why I'm surprised by this. She's mobile, she wants to explore as much as she can, and getting the junk clapped out of her lungs twice daily is old news. She's acting like a typical toddler with the attention span of a dust mite, and that's normal. The welts on my arms from her biting me are declaring another theory though.
For the sake of my skin, these last 4 lbs. can't come fast enough.
I'm talking about her CPT. Doing this stuff manually is driving me insane! On top of the incessant escape tactics Judith keeps trying, she is now biting my arms during therapies. The only time she doesn't do this? When she's completely sound asleep... at about 8:30 at night. It's so damned easy to do it then, for obvious reasons, but any time she's awake it's an all-out battle.
I am at my wit's end trying to figure out new ways to keep her occupied for the entire 24 minutes it takes us to do her CPT. Toys to chew on are boring her. The dogs and the Weather Channel don't even entertain her anymore.
I don't know why I'm surprised by this. She's mobile, she wants to explore as much as she can, and getting the junk clapped out of her lungs twice daily is old news. She's acting like a typical toddler with the attention span of a dust mite, and that's normal. The welts on my arms from her biting me are declaring another theory though.
For the sake of my skin, these last 4 lbs. can't come fast enough.
Friday, January 6, 2012
Antibiotics are Done!
Fingers crossed that we can avoid respiratory infections for a while. So far, so good - we finished the Cipro for Judith's sinus infection this morning, and the congestion and cough are gone. We dropped her CPT and breathing treatments back to the normal schedule, and her appetite seems better. Knock on wood, it looks like we avoided some of the antibiotic-related diarrhea this time as well.
There's still a long way to go before we get to the end of cold/flu/RSV season, but I'll take as many healthy days right now as we can get!
There's still a long way to go before we get to the end of cold/flu/RSV season, but I'll take as many healthy days right now as we can get!
Tuesday, December 27, 2011
Sinus Infection
This is but the latest diagnosis in the string of things Judith has had wrong in the last month. I wish my poor toddler would just be healthy for a full month. I'm really beginning to hate winter.
That cough that's been lingering for the last month or so came back full-force this weekend. She was coughing a bit Christmas Day, but by yesterday it was sounding wetter. Overnight, she was so congested, and the cough was so wet sounding that we decided not to wait and called the pediatrician.
The whole day was one giant cluster eff: Judith's regular pediatrician was out of the office today, so we saw a different one - I was nervous about this, because we haven't seen anyone else, but he was truly awesome and had a good idea about everything (so I won't hesitate to request him again if Judith's regular doc isn't available!). Then I tried calling Hershey to see what the pulmonologist would want us to do, and neither he or the nurse coordinator were there. Cue some very minor frustration for me, but I knew we'd get through everything (albeit slowly).
The pediatrician looked Judith over, removed some wax from her ear, and diagnosed her with the sinus infection. Thank goodness her lungs sounded relatively good, and the infection hasn't moved to her lower respiratory area! We were at the office for a good hour: that included the exam, the call to Hershey to set up a course of treatment, and figuring out which pharmacies in the area would carry the antibiotic we need to give Judith.
After the appointment, I had to drive to a different pharmacy than the one we normally use to pick up the antibiotic. I really was not thrilled with them, and it took them twice as long to fill it as it would have at CVS. Top it off with the cold rain that decided to start, and I wasn't in the best of moods. At least we got it though, and hopefully it'll do the trick.
So in addition to the antibiotic twice a day, we have to increase her inhaled meds and her CPT to 5 times a day. Yep, that's right: 5 times of manual CPT for the next 10 days. Trust me: I'll do whatever necessary to prevent the infection from developing elsewhere in her lungs, but it would be so much easier to do this with the vest (Judith has 4.5 lbs to go until she reaches the minimum weight, so hopefully we can start talking about that soon). Hopefully Judith will start to feel better in the next day or 2, and we can wave goodbye to this crap for a while.
That cough that's been lingering for the last month or so came back full-force this weekend. She was coughing a bit Christmas Day, but by yesterday it was sounding wetter. Overnight, she was so congested, and the cough was so wet sounding that we decided not to wait and called the pediatrician.
The whole day was one giant cluster eff: Judith's regular pediatrician was out of the office today, so we saw a different one - I was nervous about this, because we haven't seen anyone else, but he was truly awesome and had a good idea about everything (so I won't hesitate to request him again if Judith's regular doc isn't available!). Then I tried calling Hershey to see what the pulmonologist would want us to do, and neither he or the nurse coordinator were there. Cue some very minor frustration for me, but I knew we'd get through everything (albeit slowly).
The pediatrician looked Judith over, removed some wax from her ear, and diagnosed her with the sinus infection. Thank goodness her lungs sounded relatively good, and the infection hasn't moved to her lower respiratory area! We were at the office for a good hour: that included the exam, the call to Hershey to set up a course of treatment, and figuring out which pharmacies in the area would carry the antibiotic we need to give Judith.
After the appointment, I had to drive to a different pharmacy than the one we normally use to pick up the antibiotic. I really was not thrilled with them, and it took them twice as long to fill it as it would have at CVS. Top it off with the cold rain that decided to start, and I wasn't in the best of moods. At least we got it though, and hopefully it'll do the trick.
So in addition to the antibiotic twice a day, we have to increase her inhaled meds and her CPT to 5 times a day. Yep, that's right: 5 times of manual CPT for the next 10 days. Trust me: I'll do whatever necessary to prevent the infection from developing elsewhere in her lungs, but it would be so much easier to do this with the vest (Judith has 4.5 lbs to go until she reaches the minimum weight, so hopefully we can start talking about that soon). Hopefully Judith will start to feel better in the next day or 2, and we can wave goodbye to this crap for a while.
Thursday, December 15, 2011
Update
It's been an interesting past couple of days.
I worked yesterday, so my mom came up to watch Judith (John also had a day off, but went to the church most of the day to get ready for Christmas services and whatnot). She threw up everything she had that morning, and still wasn't herself. So by the afternoon, I decided to take her to her pedi and get checked out.
Everything was generally looking ok, except she had a fever and her lungs sounded a little crackly when she was laying down. Her doc said she more than likely was fighting off a virus, and took a swab of her nose to check for bigger problems (like RSV, flu, etc.).
Today her fever seemed to be breaking (yay!), but she started to get the squirts, and they were really mucousy. I put a call in to her pulmonologist to make sure it wasn't antibiotic related, and he also said it sounds like a virus, so we could stop the antibiotics since she already had 2 rounds prior to this. This afternoon, I got the call from the pedi that Judith's nasal swab was negative for more major viruses (another yay!). So we could still be looking at a cold, or she may have picked up a rotavirus infection. Whatever it is, it seems to be working itself out of her system, and I hope she'll be in better shape by this weekend. In the meantime, we'll keep doing her CPT 3-4 times a day as needed, and we increased her Albuterol to help keep her airways open - hopefully that will prevent anything bad from setting up shop in her lungs!
I worked yesterday, so my mom came up to watch Judith (John also had a day off, but went to the church most of the day to get ready for Christmas services and whatnot). She threw up everything she had that morning, and still wasn't herself. So by the afternoon, I decided to take her to her pedi and get checked out.
Everything was generally looking ok, except she had a fever and her lungs sounded a little crackly when she was laying down. Her doc said she more than likely was fighting off a virus, and took a swab of her nose to check for bigger problems (like RSV, flu, etc.).
Today her fever seemed to be breaking (yay!), but she started to get the squirts, and they were really mucousy. I put a call in to her pulmonologist to make sure it wasn't antibiotic related, and he also said it sounds like a virus, so we could stop the antibiotics since she already had 2 rounds prior to this. This afternoon, I got the call from the pedi that Judith's nasal swab was negative for more major viruses (another yay!). So we could still be looking at a cold, or she may have picked up a rotavirus infection. Whatever it is, it seems to be working itself out of her system, and I hope she'll be in better shape by this weekend. In the meantime, we'll keep doing her CPT 3-4 times a day as needed, and we increased her Albuterol to help keep her airways open - hopefully that will prevent anything bad from setting up shop in her lungs!
Tuesday, December 13, 2011
Sharing
We're learning to share in our house this week! /sarcasm
It's official: Judith caught the cold that John & I have. ::sigh:: This isn't unexpected, but the timing is what threw me for a loop.
She was a little more "off" today, but I was chalking it up to the possible growth spurt. I kind of brushed off some of the other signs, because they're so typical for a Tuesday around here: disinterest in her lunch, wanting Pediasure more than the food, fussy before therapy, etc. She was fussy during therapy today, and she hasn't been that way for a while - normally she's fussy at the end because she wants a nap after all of that work. Today, though, I put her on my lap and she snuggled into me and noticed her forehead felt warm. As soon as we finished up, I headed upstairs (like normal - she'll usually take a good nap when she's done) and took her temp.
100.2
Crap.
I put a call in to the clinic and talked to the nurse coordinator about what we should do. She took a record of everything I noticed (Judith's temp, symptoms, that sort of stuff) and passed it on to the doctor. She called back after a bit and said that the doc would phone in a prescription for another antibiotic, and that it sounds like Judith has another virus she's fighting off. She also told me that we could take Judith to her regular pedi to get checked out if it would make us feel better, and I asked if we could wait a day or 2 since we were starting the antibiotics. Thankfully she said that would be ok, but also gave us some signs to look for that would indicate Judith was getting sicker.
So now we're on round 3 of antibiotics (bactrum again), we're increasing CPT, and we're to give her Tylenol to help with the fever. Currently, Judith is sleeping off whatever is invading her system. While it's nice to have some quite time, I'd rather have it because she's healthy and it's bedtime.
I have a feeling it's going to be a long winter...
It's official: Judith caught the cold that John & I have. ::sigh:: This isn't unexpected, but the timing is what threw me for a loop.
She was a little more "off" today, but I was chalking it up to the possible growth spurt. I kind of brushed off some of the other signs, because they're so typical for a Tuesday around here: disinterest in her lunch, wanting Pediasure more than the food, fussy before therapy, etc. She was fussy during therapy today, and she hasn't been that way for a while - normally she's fussy at the end because she wants a nap after all of that work. Today, though, I put her on my lap and she snuggled into me and noticed her forehead felt warm. As soon as we finished up, I headed upstairs (like normal - she'll usually take a good nap when she's done) and took her temp.
100.2
Crap.
I put a call in to the clinic and talked to the nurse coordinator about what we should do. She took a record of everything I noticed (Judith's temp, symptoms, that sort of stuff) and passed it on to the doctor. She called back after a bit and said that the doc would phone in a prescription for another antibiotic, and that it sounds like Judith has another virus she's fighting off. She also told me that we could take Judith to her regular pedi to get checked out if it would make us feel better, and I asked if we could wait a day or 2 since we were starting the antibiotics. Thankfully she said that would be ok, but also gave us some signs to look for that would indicate Judith was getting sicker.
So now we're on round 3 of antibiotics (bactrum again), we're increasing CPT, and we're to give her Tylenol to help with the fever. Currently, Judith is sleeping off whatever is invading her system. While it's nice to have some quite time, I'd rather have it because she's healthy and it's bedtime.
I have a feeling it's going to be a long winter...
Thursday, October 6, 2011
CF Clinic
We had yet another appointment at the CF Clinic today. It wasn't a horrible appointment, but it wasn't great either. I feel frustrated, and I'm concerned about where things may be headed (I could also be making a mountain out of a molehill).
The good news:
For the immediate future, it looks like we can avoid a nebulizer for breathing treatments. Judith's lungs sounded clear, and her doctor didn't mention a need for one right now. She grew a little more than an inch, and is over 26" long! We got a bigger percussor to use for her CPT - it's such a minor thing, but I'm hoping I can get better coverage in the zones to get more crap out of her lungs.
The bad news:
Judith gained a half a pound since her 9 month well-baby visit, and only gained 800g since July - she weighed 15 lbs 8 oz. The slowdown could be caused by her increased mobility, but it could also be a red flag for something bigger brewing. So now we get to do another fun poop collection to check if her pancreas is still functioning normally or not. If it's not, that means she'll have to start taking pancreatic enzymes every single time she eats. We're also working frantically to build up her caloric intake to boost her weight gain again. We're going to add some snacks to her routine, add a third solid meal, and possibly boost her Neosure from 22 calories to 24 calories.
We had to take her for a chest x-ray right after her appointment. The last one she had was in the NICU, and her pulmonologist wants to see what's going on. Judith's coughing has increased, and she's been spitting up mucous, so even though her lungs sounded clear he wants to rule out any problems. Poor Judith was so tired and cranky and did not want to put up with being x-rayed. She did well though, and the radiologist said the films turned out fine.
This is so minor in the grand scheme of things, but I asked about the requirements (so to speak) to get The Vest for her daily CPT treatments. She needs to be at least 22 lbs to start on it, and we're nowhere near that. While The Vest would make life a little easier (and possibly simpler, but I'm probably delusional with that), it looks like manual CPT is the plan of action for a while yet.
I wish I could get some straight answers. We need to get the latest test results back to get a handle on things, but in the meantime I'm frustrated and worrying about the outcomes.
The good news:
For the immediate future, it looks like we can avoid a nebulizer for breathing treatments. Judith's lungs sounded clear, and her doctor didn't mention a need for one right now. She grew a little more than an inch, and is over 26" long! We got a bigger percussor to use for her CPT - it's such a minor thing, but I'm hoping I can get better coverage in the zones to get more crap out of her lungs.
The bad news:
Judith gained a half a pound since her 9 month well-baby visit, and only gained 800g since July - she weighed 15 lbs 8 oz. The slowdown could be caused by her increased mobility, but it could also be a red flag for something bigger brewing. So now we get to do another fun poop collection to check if her pancreas is still functioning normally or not. If it's not, that means she'll have to start taking pancreatic enzymes every single time she eats. We're also working frantically to build up her caloric intake to boost her weight gain again. We're going to add some snacks to her routine, add a third solid meal, and possibly boost her Neosure from 22 calories to 24 calories.
We had to take her for a chest x-ray right after her appointment. The last one she had was in the NICU, and her pulmonologist wants to see what's going on. Judith's coughing has increased, and she's been spitting up mucous, so even though her lungs sounded clear he wants to rule out any problems. Poor Judith was so tired and cranky and did not want to put up with being x-rayed. She did well though, and the radiologist said the films turned out fine.
This is so minor in the grand scheme of things, but I asked about the requirements (so to speak) to get The Vest for her daily CPT treatments. She needs to be at least 22 lbs to start on it, and we're nowhere near that. While The Vest would make life a little easier (and possibly simpler, but I'm probably delusional with that), it looks like manual CPT is the plan of action for a while yet.
I wish I could get some straight answers. We need to get the latest test results back to get a handle on things, but in the meantime I'm frustrated and worrying about the outcomes.
Thursday, June 16, 2011
CF Treatments
I'd like to do another educational post of sorts, and tell you about the treatments Judith needs to have daily for her CF.
Twice a day, at her 6 AM & 6 PM feeds, Judith receives 2 puffs of Albuterol from an inhaler. This is to open up her airways so she can breathe easier. So far, we have not had to use a nebulizer (knock on wood), but I know that there's always the possibility that she will need one in the future. Judith doesn't really mind the inhaled meds, and will often talk to us through her spacer.
The fun part (and I use the word "fun" loosely) is her twice daily CPT treatments. CPT stands for Chest Physiotherapy (some people will refer to it as Chest PT), and this is the act of moving the mucous from the small airways to the large airways so Judith can cough it up. It also prevents the mucous from sitting in the lungs and festering, which would cause lung-damaging infections. This is not a treatment that will go away over time; in fact, this is a treatment that must be done daily no matter what, and will have to increase in frequency whenever she's sick.
This therapy may be something you're familiar with, or may be something you think of when you hear "cystic fibrosis": it's the treatment where someone claps on the lungs with a cupped hand or a special percussor (kind of looks like an air hockey paddle, but with a concave middle on the underside). It can be done manually, or it can be done through a special vest. We have to do it manually for now, because Judith isn't nearly big enough for the vest!
So every day, twice a day, Judith and I go through her CPT. There are 3 "zones" (that's what I like to think of them as) that get the treatment, front and back: the upper chest, the middle chest, and the lower chest. In each of these "zones," there are 2 areas that need to be percussed: 1 on the left, and 1 on the right. Judith has to lay or sit a certain way while each area is being treated. Keeping her in the proper position is the trickiest part right now - she's way more interested in rolling around! I'm waiting to see what's going to happen when she's mobile and can crawl away. The whole process is going to remain interesting until she's old enough to understand things!
I know this wasn't the most interesting thing I've posted, so if you managed to make it through this you deserve a cupcake!
Twice a day, at her 6 AM & 6 PM feeds, Judith receives 2 puffs of Albuterol from an inhaler. This is to open up her airways so she can breathe easier. So far, we have not had to use a nebulizer (knock on wood), but I know that there's always the possibility that she will need one in the future. Judith doesn't really mind the inhaled meds, and will often talk to us through her spacer.
The fun part (and I use the word "fun" loosely) is her twice daily CPT treatments. CPT stands for Chest Physiotherapy (some people will refer to it as Chest PT), and this is the act of moving the mucous from the small airways to the large airways so Judith can cough it up. It also prevents the mucous from sitting in the lungs and festering, which would cause lung-damaging infections. This is not a treatment that will go away over time; in fact, this is a treatment that must be done daily no matter what, and will have to increase in frequency whenever she's sick.
This therapy may be something you're familiar with, or may be something you think of when you hear "cystic fibrosis": it's the treatment where someone claps on the lungs with a cupped hand or a special percussor (kind of looks like an air hockey paddle, but with a concave middle on the underside). It can be done manually, or it can be done through a special vest. We have to do it manually for now, because Judith isn't nearly big enough for the vest!
So every day, twice a day, Judith and I go through her CPT. There are 3 "zones" (that's what I like to think of them as) that get the treatment, front and back: the upper chest, the middle chest, and the lower chest. In each of these "zones," there are 2 areas that need to be percussed: 1 on the left, and 1 on the right. Judith has to lay or sit a certain way while each area is being treated. Keeping her in the proper position is the trickiest part right now - she's way more interested in rolling around! I'm waiting to see what's going to happen when she's mobile and can crawl away. The whole process is going to remain interesting until she's old enough to understand things!
I know this wasn't the most interesting thing I've posted, so if you managed to make it through this you deserve a cupcake!
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