Preemie Parent or anyone with O2 knowledge

mcdev

We have an appointment with Keira's pulmonologist at CHOP on Thursday. ?I want to come prepared with questions. ?Any suggestions??

To sum up where Keira is with her O2......

• ?She goes through the entire day without O2. ?Even naps. ?During her naps she averages 95% or above without O2. ?She never desats.
• She uses 1/8 liter O2 at night, but will often desat (lowest being about 88%) even with the use of O2.
• Did one trial at home without O2 (back in early Jan) and she continuously desatted.
• We have a sleep study scheduled May 18th at CHOP, but feel really unsatisfied with their care plan. ?Actually, I feel like there is no plan to get her off the O2. ?This wait and see approach is driving me nuts! ?Shouldn't we be more aggressive or am I just talking out of frustration? ?Plus she is now 14lbs and they haven't changed her medication dosage since she was 6lbs (diretic & potassium). ?Is this even therapeutic at this point?

preemieparent

I woud be frustrated too!  

Here are some suggestions - I hope they help.

Medicine - I would ask to have a Chem panel done to see where her potassium, etc. levels are.  Chances are she doesn't even need them anymore.  Our doc tried to get her off those as fast as possible.   If the numbers are normal than I would ask to have a plan to wean her off of those drugs - it shouldn't take too long.  In fact - if they haven't raised her doses than they are basically weaning her anyway.

For the O2 - that is interesting that she desats at night even with the O2.  Are you sure that you are getting a solid read at night?  Meaning - does she kick a lot or move around alot?  Potentially throwing the pulse ox and giving a false reading? 

Assuming the reads are good, It sounds like she still needs the O2 at night.   Perhaps they should actually raise her O2 for night to help built up her reserves (more O2, she isn't working as hard, etc.) I know our pulminologist often will raise kids initially when they get out of the hospital just to help them out.  

I would definitely do the sleep study - just to really get some good solid info that you can use to force them to make a plan.  Once you have the results from the study I would actually insist on them sitting down with you to make a plan.

So to sum up my rambling I would ask:

Medicine -Ask for a blood test.  If levels are normal, ask when/how they will completely wean her off

O2 - ask about potentially raising the level to see if that helps.  Actually, have you tried raising her to 1/4 just to see if that stops the desats?  I would consider doing that before the appointment so that you know before going in there.  If it does help than tell them that you raised the level and want to keep it raised for at least a couple of months and then try dropping again.  And I would point blank ask them - what is your plan to get Keira off the O2?  What are the steps?  What is your timeline?  

Does that help?

lstaylor73

I've got nothing to add, Preemie Parent hit all the points I can think of.  I just want to wish you good luck.

mcdev

Yes, thank you. ?It really does help. ?I am so anxious for the sleep study so that I can find out once and for all if she is in need of the O2 or if it is just the pulse ox not getting a good read like you suggested. ?She is a pretty sound sleeper with little to no kicking, but you know how sensitive those monitors can be. ?I would love to think that that is the reason for desats, but I also realize that that could just be wishful thinking. ?One thing she does do throughout the night that certainly affects her saturation levels is pull the cannula out of her nose. ?She usually sticks it in her mouth or pulls it so hard that it slips out of the tender grips and the cannula goes around her neck. ?I am so paranoid that she is going to hang herself that I am up constantly checking her throughout the night. ?Does Olivia fight the cannula at all or has she just gotten to the point of acceptance? ?I hope Thursday's appointment gives us some kind of guideline.

As always, thank you for your advice! ?:)?

mcdev

Thanks Laura! ?We must have posted at the same time!

preemieparent

Olivia doesn't fight the cannulla anymore - she's pretty much just accepted it as a part of her life.  One thing I used to do for awhile with Olivia is use two sets of tender grips.  One set would be farther down her cheek and the other set was closer to her hair, near her ear.   It was just a little bit of extra security.

If she has the cannulla on during the day and you see her pulling it out - gently pull her hands away and say no.  We had to do that for awhile but it really did help.

Good luck at your appointment - let us know how it goes!

bananachiki

there's tube stabalizers you can put on the outside of the tubing to make it hard and straight to prevent strangulation risks. reminds me of the straws the put on the stems of gerber daisys to prevent them from drooping.