Q&A

The Balsis Family said...
Umm, oxy tent? I know you don't have one handy, but I bet they can get you one. In the meantime ... ummm ... do you have a nebulizer mask? Would that work? Like she is going to sleep with a neb mask on. LOL UGH ... um, what about laying the blow by tube near her mouth?
Unfortunately she's a wiggler. She ties herself up in her cords during the night pretty much every hour! LOL I may resort to a mask or tent but for now will try to modify what we're already doing.. Hmm... :)

Stephanie said...
You are using an concentrator, right? Not tanks? You could crank up the flow or use a blow by. Or let her put the cannula in her mouth to really confuse her! I'll bet she isn't breathing entirely through her mouth. My little guy always has better sats when taking a bottle or a pacifier since he would be forced to breathe entirely through his nose instead of mixing with room air. Will she chew or suck on something?
You're right, I don't think she's entirely breathing through her mouth because she's still getting SOME O2. I did give her a toy to chew on and another time her bib and those helped a little. I can't put the cannula in her mouth because she and her killer chompers about chewed through one already and I don't want her to choke!

Erin & Scott said...
Is her nose plugged? Is the oxygen running continuously? Because even if she's not consciously breathing through her nose, the O2 continues to fill her mouth/nose cavity, so she should still be getting some oxygen as long as the oxygen is flowing.
Yes, her nose is plugged. Yes, the O2 is running continuously so she should get SOME! At least it's better than nothing- she IS leaving the cannula in!

Leah said...
Do you have a 24 hour walgreens near you, or a pharmacy that's open late? They carry masks, and they're only about 6-5 bucks. I've had a pharmacy GIVE me one before!
Not a bad idea... I'll try that if we end up in another pinch. I didn't realize Walgreens would carry them.

She's a stubborn little girl, isn't she? That has served her well in the past, I'm sure. I would think breathing thru her mouth would dry it out. Then again, O2 dries out the nose, even with the mist. It is probably habit too. Having had the tonsils, etc, she probably HAD to breathe through her mouth a lot. Hopefully you can keep her mouth full with chewing toys/bibs so she can get in the habit of breathing through her nose. I really don't have any ideas. I can't see her wanting the mask on. Jan
I'm with you on the mask. I don't think she'd keep it on, so I doubt it would help that much. Except in maybe using it to 'blow by' like they did when she was still out of it after her cath maybe? But then again she's a wiggler...

Michelle said...
oh gf...I know this is eating you alive. she knows you love her, shes just scared. It has to get better soon. What about an o2 bed? The kind with a hood thing that covers the entire crib?
Wouldn't that give her TOO MUCH O2? Dunno

Stephanie said...
oh meredith, my heart sank when reading about her crying at the sight of you too. I'd really check into getting a homecare nurse to come in and relieve you (and emma)even for just a few hours a day.
I agree, she just thinks I'm doing it to be mean right now, but at the same time, those are the times she needs to be consoled and I think that for now Mommy (or Daddy) needs to be the one to do it. Even if I had a nurse here I'd be in there every time she cried. And rally, I think that's the right thing to do for newly adopted kids ;)

Meredith, my heart breaks for you. how hard it must be, and how desperate the situation feels. I wonder, can you sleep with her? That has helped me bond with my boys. I know she is five, but still, she is going through a hard time right now, and so are you! I'm praying for Emma (and you!). --Kim
I have thought about your comment several times. I know she couldn't sleep in my bed because she is a MOBILE sleeper and it just wouldn't let anyone sleep. I have, however, taken the opportunity to lay in her room with her until she's asleep the last few nights and then lay her down. She's getting used to the idea that it's ok. Before she would FIGHT to not fall asleep until she was put down, so I think it's helping with bonding to have her trust me enough to fall asleep with me. Thanks.

Delahne said...
A bit off the subject, but have you tried putting the tubing behind her head? Put the cannula in, but instead of around her ears and under her chin, go over her ears and cinch it at the base of her head. I used to do that with patients to help them not pull it off.
Sorry to hear you're going through a rough spot.
I just started doing this. THANK YOU! It pulls on her ears a lot less and it isn't tight under her chin now. If the cannula isn't tight to her nose she pulls it out, so this lets me tighten it without hurting her ears/neck. It does scare me a little that when she pulls it off it's now around her neck though...

Also, maybe you could find some sort of soft tubing that would be safe to let Emma put in her mouth and strong enough that she could chew on it and not destroy it. I don't know what that would be, but sometimes the guys at the hardware store can be very creative too.Natalie
That's a thought, I know there are "chewy tubes" but we haven't gotten one for her yet. I don't think it's that she wants to chew the tube so much that she just doesn't want it in her nose and it naturally goes to her mouth if she moves it out. But she does like to chew so I'll look into those!

Anonymous said...
Can't you just get a mask? If not- How about taking two lines, taping them to the very edge of the cracks of her mouth that way when she breathes through her mouth she has oxygen shooting right at the front? You can also bottle feed her with the nipple in her mouth and the hose taped to the top of the bottle shooting towards her nose so she has no choice but to breath it in during feedings.
Also, what about nebulizer treatments? Something misty with extra oxygen and mist to keep her clear and getting a boost of air?
All good suggestions. I'll keep them in mind. I do have a neb for Micah but didn't know there would be an O2 treatment... Granted she needs it while sleeping so I'm not sure if that would help...

Here's the website. I swear by this stuff. If they'd let me keep him on it, I would. It was a god-send. He won't take oral meds at all. So the only thing I can do is baby saline spray. it helps alot. So if they won't do the rhinocort, try the saline. (Baby Ayr is good)http://www.rhinocortaqua.com/ Jan
Thanks! If this continues then I'll ask our ped! :)

When william had low stats in the Dr office we were transported to the child. hosp 1 hr away. They did not have a canula small enough for him, so they put a hole through a styrophom cup and put the o2 tube through that. I know that Emma would eat though that type of cup, but do you think you could think of some other type of contraption with that type of opening so that it would be getting O2 into her mouth since that is how she seems to breath? Does this make sense to you? hOpe so.
April narrettofamily.blogspot.com
Interesting idea, I'll keep that one in mind! I'm sure I could use a butter tub or something...

5 Boys and a Girl said...
Meredith, both with Andy, who had O2 24/7 till he was 5 and now when Alexi gets a URI, I tent them. There is a full crib tent or a smaller one that covers their upper body. With Alexi, I have to wait until he is actually asleep and then slip the smaller tent over him. Andy never really fought his O2. He'd had it almost since birth, even now as a teen he ocassionally needs some with a severe URI.
Ah, you're the one I should ask if that raises the O2 levels too high or not? I'd think a tent would give her a much higher concentration of O2 than the cannula...

jess said...
if you want a mask i am a respiratory therapist, i can get u one but the flow has to be higher, like 5 lpm. email me ur address and i can send u one.
mrsjradford@gmail.com
p.s. i love ur blog, glad people like u are out there. it brakes my heart to think off all the kiddos out there needing homes.
Thanks Jess! I'll send you an e-mail.

narretto said...
What has this world come to? Please tell me how to do this to my pics
april
Depending on how you post your pictures you have several options. If you use Photobucket then go in to "edit" your photo and under one of the top tabs there is an option to add text. Change it however you'd like and if you save over the current photo then wherever it's already published it will now be replaced with the one with a watermark.

If you have photoediting software on your computer it's not so hard to open the picture, add some text on it, then save it as a NEW NAME so you don't lose the original in case you want to print it later :)

I use Windows Live Writer to blog and was able to add watermarked text to the top, bottom, or center of each picture. It has limited options for watermarking, but i can then "republish" my blogs and they change to the watermarked pictures. I LOVE this program!

If you have any more q's please leave me a message or e-mail me mkp1982@hotmail.com and I'll try to help!

Jester 5 said...
I don't want to seem paronid but you might want to consider where you put the watermark. . .I was look through some and noticed that you put them pretty close to the bottom. If someone is willing to "steal" them, it wouldn't take much to crop that part of the photo off.
You are right! When I was going back through the pic's quickly I used the Windows Live Writer to add watermarks and on the pic's that the watermark in the CENTER of the pic would ruin the picture I had to choose top or bottom. I figure something is better than nothing and decided to watermark there. For ones I edit on my computer I have unlimited options :)

Laura said...
So cute. Would "hip helpers" help her to stand more easily??
Not sure, haven't tried those in over a year! If she seems to not get it too well in the next few days then we might try something like that (an ace bandage can work to do the same thing-- temporarily of course :) ).

Keep working on it, Brianna! How exciting that she just decided to do it, though that's been her M.O. all along! How long have I been on vacation- Micah's creeping and Brianna's standing up on her own! They are trying to put me out of a job!
Jeanette
No worries, Jeanette, we still need you! Though you're right, Brianna does like to wait until no one's pushing her and just DO it!

Christina said...
YAY! That is so awesome! I was looking for the other video too, I guess that'll be up tomorrow?! LOL
Ah, yes. I got it about 45% uploaded last night when I restarted my computer and had forgotten it was running! Mike compressed it for me to upload this morning :) It's there now though :)

Anonymous said...
that is so neat. Does Micah possibly have Mosaic Downs? He has very mild features and is advancing so fast, you can see him even arching his legs like he wants to bear weight on them. I bet he is walking pretty close to on schedule. I notice Emma is laying down a lot and without her glasses, she might have some equalibrim issues, you don't get her more upright and with correct vision. Perhaps she could enjoy some more time in a walker or bouncy chair with her glasses on? I know adults that lay around a lot get very sick to their stomach when it is time to start sitting and walking again, perhaps you could get her more upright, stregthen those core muscles before surgery? Just a thought now that she is feeling better.
I have no idea what type of Ds Micah has. Actually, he's NEVER had a blood test! His paperwork from Ukraine says "Down syndrome/ unproven" and our doc here siad "oh, yeah, he has Ds" and put it on his chart! Maybe one day we'll do the blood test. I do know that there are kids with mosaic Ds that have a LOT of the physical attributes and delays of regular T21 and I don't think there is a correspondence between whether the child has Mosaic Ds and their "level of functioning" if you kwim. Anyway, we don't know :)

As for Emma, she doesn't hold her head up really long so we try not to put her upright for too long of a time. She does go in the jumperoo and will sit in our laps or on the floor with support. She doesn't sit independently for more than a few seconds yet. She wore her glasses all day but I took the video when prepping everyone for bed and when the babies had shed their glasses I left them alone :) It's difficult to get her upright for any period of time because she doesn't support herself well, but she also gets very bored in the stationary things and wants DOWN to ROAM! LOL