Infant PFT scheduled for Tuesday

[heidikk]

Anyone want to talk me down / through this? I realize they do these things all the time and I should therefore not worry. LOL (seriously, I've never been such a worrier in my life! I don't know what's wrong with me.) The sedation and the procedure itself sound a bit creepy, but practically, I have a few questions too. 1. He can't nurse after 5 am, though he can have pedialyte as late as 7 am (of course we'll be on our way there by 6:30 so that's effectively his cut off for that too). We're supposed to get there by 8:30 am and the information sheet says that is 1 - 2 hours before the actual procedure. The nurse on the phone also said that it would likely be around 2:30 PM that he would finally be done. Are we honestly talking about 8 hours during which he can't eat anything and almost 10 during which he can't nurse?! Or will there be a point during that crazy long day when they will say, "ok, he can eat now"? Mainly I'm concerned about him, but now looking at those numbers, I'm realizing that I'm going to be ready to burst too, kwim? 2. The information sheet says that for the rest of the day he should not be left alone. Should I bring one of the older children along to sit next to him on the way home since I can't see him while I'm driving? and 3. can anyone explain step by step what this day will look like? I understand the basics of the vest and the mask and the box that he'll be put in, but how much of those ten hours does that take up? hmm and one more 4. am I stupid to let them do this as a "baseline" test? - Heidi mom of Dekorrah 5mo son with ddf508 cf

 

[Aboveallislove]

Heidi,
Know exactly what you are going through. We did 2 with our son around 6 months and then a year. We decided not to do more after b/c it didn't seem to give any more helpful knowledge and it was pretty stressful (on us) and with limited benefit didn't seem worth it. The sedation and procedure weren't bad--it is more just the general worry of cross-infections and the long day. It helped us know he might have an asthama component but in the end they didn't do anything differently and only dealt with asthama componenet when he showed symptoms and in fact never considered the test results but it came up from my description. I know they say a baseline but they can't do past 2 years so i don't see how that helps a ton other than that time. I'm not saying don't do it--I don't know what I would do if doing over again, I liked having a sense his lung function was good and that asthama could be an issue, but just not sure.

Re the procedure etc. I would suggest you just wake and nurse at 4ish and then not worry about it from his end. He'll be fine b/c he'll be drugged up by 930 and bring a pacifer if need be. I'd have an older kid go b/c you might want someone to hold him while you go pee (or express milk--bring a bag or something and just manual express if you are about to burst and/or to prevent you from starting to tell your body to slow down). He'll be able to nurse about 30 minutes after procedure. When you get there they have you weight, height, etc. and just logistical stuff, like you have to all be in room etc. without coming and going, etc. They have the room set and then drug him. Wait for him to be sound asleep and then procedure takes like 30 minutes. Like 30 more to wake and then he can drink--in fact they won't let you go until he does drink and they usually wait about 30 minutes after awake and he has drank to let you g. After he will still be drugged up for some time--we got home and I put him down in playpen to pee (after 6 hours or so) and he stood up and fell flat straight down. Felt horrible. The procedure looks "scary" but at first but it really isn't a big deal in the end (and trust me I was freaked by it much worse than it was).

I'd call and ask for the tech to walk you step by step through the procedure. There is no reason they can't do that!!!
Let me know if any other questions.

 

[heidikk]

thank you for your help. I did talk to the tech and was disappointed to find that the hospital does not have a pump that I could rent so I guess I'll have to do things manually if it gets too bad. She also said that the procedure itself will start about 9 am and will take about 3 hours (!?) I don't think I'll be saying yes to one of these again if I can get away with it. Prayers for us tomorrow would be hugely appreciated.

 

[Aboveallislove]

will definitely say prayers. i think that is 3 hours including prep, drugging, waiting to sleep, procedure, waiting to wake, waiting to feed and assess. YOu can still cancel if you aren't comfortoable with it. please do know of prayers. I remember how stressed I was before and during. But the procedure itself really isn't bad.