O2 saturation monitor

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amber682

New member
Hi! I just have a question about children with cf who are too young to do pft's. My son's old clinic hooked him up to the oxygen saturation monitor for a few minutes at every visit, just until they got a reading. The new clinic we go to doesn't do this. I was just wondering what everyone else's clinics do for young children.

I was so used to it being done every time, and it made me feel better if he was sick because atleast I knew his O2 was still at a good number. Now that the new clinic doesn't do it, I worry because he's been fighting this cough for almost 2 months now. Tomorrow is our 3rd visit in a month due to this cough and they haven't done it yet, so I'm assuming they don't. But I'm going to ask tomorrow, I just wanted your opinions on this. (We'll see if they admit him, they've been threatening one more week and if no improvement he's going to be admitted <img src="i/expressions/face-icon-small-sad.gif" border="0">)
 
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anonymous

New member
One thought is you can pick up a pulse oximeter to use at home. A good trustworthy one will run you around 150 to 200 dollars, but piece of mind might be worth it. I've been using one for a while now to monitor my exercise regimen. Just knowing you have a good oxygen level makes you feel good. . .
 
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julie

New member
Mark's clinic does it for adults too. I would ask about it, it's important to know that he is getting enough 02.
 
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coltsfan715

New member
I usually get this as an adult. I can not recall not having this done. As for peds I never had this done that I can remember. They would only do this if I was in the hospital or sick or something. They may have changed practices since I left a few years ago, but like I said when I was there I never had that done.

Lindsey
 
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Nicole

New member
My son has been to three different clinics and they have checked his O2 at every visit at each clinic.
 
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anonymous

New member
Our CF clinic always checks the O2 sat at each CF clinic appointment. Ususally the resp therapist does it. Just ask if they routinely check O2 sats in clinic because at your old clinic they did.

Rebecca(mom to sammy 8 no CF and Maggie 3 1/2 with CF)
 
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NoExcuses

New member
I have always been hooked up to one as a ped and now as an adult.

now I have one at home so I can monitor it when i exercise. My insurance covered all about $5 of it. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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amber682

New member
Thanks everyone for your replies. I always assumed they only did it for the little ones who are too young to do pft's, or obviously when you're in the hospital. (As you can see I'm still kinda new to all this!) I'm going to ask tomorrow about it, but I don't see why they haven't been doing it the past few visits while he's been sick. Especially since at the last visit to the old clinic they were a little lower than his usual.
I swear the stress of switching clinics in the middle of this unexplained coughing/wheezing and having to let go of everything the old doc said we'd do (who I loved by the way) and let this new doc (who I barely even know) do his thing is going to kill me! All I know is that if we hadn't had to switch due to state insurance coverage on the very day that the dr. wanted Vinny admitted, we'd be home from the hospital by now and he'd be all better.<img src="i/expressions/face-icon-small-mad.gif" border="0">
 
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thelizardqueen

New member
My biggest piece of advice is Advocate. If you think something should be done - push for it. You are the customer, and they are simply the service provider.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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amber682

New member
While I was writing that Amy replied: Did you mean all but $5 of it? I never really thought I needed one since he's so young and his lungs are prob in pretty good shape. (He's rarely sick except for this last 2 months) BUT, if they're not gonna do it at his visits then I would like to be able to do it myself!
 
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NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>
My insurance covered all about $5 of it. <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>

i meant what i said and i say what i mean.

yes! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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amber682

New member
And thanks Liz. I have a ton of questions I'd like to ask them, but for some stupid reason I always feel like they will think I think I'm smarter than they are, or second guessing them, or just not trusting them. To tell you the truth, I don't necessarily trust them yet. I don't know why I even care what they think, because then I'm up not being able to sleep at night wondering about everything! And all I really care about is my son's health. I even write a little list of questions sometimes, but then I don't ask them all when I get there. Well, I've strayed far enough off topic, so thanks again. I need to just get that in my head: ADVOCATE!
I'm going to ask all the questions on my list tomorrow if it kills me!
 
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Emily65Roses

New member
The same as some others, I've always had the oxygen sat monitor. Whether I did PFTs or not, whether I was a baby or not. It's still one of the first things they check on me when I go in for my appointment.
 
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JazzysMom

New member
Always get checked at the clinic & during the taking of vitals while in the hospital. When I was extremely sick I was hooked up to the o2 sat 24/7. At one time I couldnt tell by how I felt so that # was very important to us!
 
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thelizardqueen

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amber682</b></i>

I have a ton of questions I'd like to ask them, but for some stupid reason I always feel like they will think I think I'm smarter than they are, or second guessing them, or just not trusting them.

<i>If they think that you are doing all of the above, and not listening to you, then that's their problem (as harsh as it may sound). This is your child, and so you are entitled to ask as many questions as you want.</i>

I even write a little list of questions sometimes, but then I don't ask them all when I get there.

<i>Having a list is a great idea. I always make a list of questions and concerns to ask when I go into clinic, and my nurse loves that I do. Both her and I go over every question that I have, and if she doesn't have an answer for me right away - she looks into it for me and gets back to me. The way she and I look at it, is that we are both learning together.</i>

Well, I've strayed far enough off topic, so thanks again. I need to just get that in my head: ADVOCATE!

I'm going to ask all the questions on my list tomorrow if it kills me!

<i>Good job. I'm sure you'll do just fine, and you'll get all the answers you're looking for! I admire the parents (such as yourself) that set out to getting all the answers they want, and advocate for their child. I know that had my mum not instilled this into me, and fought for my care, that I probably wouldn't be the woman I am today.</i></end quote></div>
 
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coltsfan715

New member
I was going to add kind of to what Liz was saying. Sometimes the docs don't really realize how severe the situation is. They see you for a brief amount of time in the office. You are with your son all the time. I have had docs tell me that I am not that sick or not needing to go in the hospital, but then I tell them how I am feeling and stress to them that I am not exagerrating and that it may not seem like a big problem or I may not be coughing a whole lot in the office, but that what I am experiencing is NOT normal for ME. Sometimes that is all it takes. Especially since you starting seeing these docs while Vinny was sick.

They may not realize that this is not normal for him unless you stress to them that there is something going on and you think he needs to be admitted. Has he been admitted before? If he has and you think he is more sick this time than in past hospitalizations then say so. Tell them that when he has gone in the hospital before that he was NEVER this sick and that you really don't see a difference with the medicines they are giving and think that IVs may be the way to go with him this time.

Docs deal with a lot of people and trust me you are NOT going to be the worst parent or most inquisitive parent they deal with.

Good Luck tomorrow,
Lindsey
 
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kybert

New member
no o2 check up for my clinic. they have one, actually, they have several oximeters but the staff are too lazy to use them. you could walk in there huffing and puffing with blue lips and they wont bother checking your sats. utterly ridiculous...
 
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