Have you tried the sprays that deaden the pain. (May taste so bad she wouldn't like it) BUt my son wants the chloraseptic type sprays when his throat hurts. Good luck -Jan (yes, me again)
I haven't tried these, but she seems to be picking up on eating a bit so I'm hopeful we've passed the roughest part now!
We go to the pulmonologist on Tues so I can send you our extras if we get the go ahead! -Cammie
Thanks Cammie! I hope all goes well for Addy so you don't have to mess with it anymore!
Perhaps the socks on the feet and hands will help. Those darn pulse/ox straps don't make a good connection half the time anyway. You almost need a new strap every night.Good luck -Jan
I have been putting socks on her hands and foot (the one with the pulse ox) and I do think it is helping! Granted just a few nights and she can now take them off quickly, but who knows! We've already had one strap for the pulse-ox go bad (won't read anymore) and we've only been home for 4 nights... I hope the next one lasts longer! We are leaving it on when we can either for the morning or the afternoon since it bothers her more to take it off/put it on than to just leave it on.
Thinking about you and your sweetheart- hoping Friday night was an easier night for miss Emma. -Cathy
Friday night... that seems so long ago! LOL
Have you tried putting the cannula/tubing on backwards? -Anonymous
No, haven't tried that, but I think we found a solution! The tape left a sticky residue on the tubing and it just sticks to her face :) NO RASH! LOL
Dom wouldn't leave his alone one hospital stay either and we ended up doing 'blow by' o2 for him and keeping his sats ok for him- he typically runs between 96-98 healthy, and when sick, 94-96. it was enough to keep his sats high enough- i can't remember Emma's range of normal right now....do you think that would work? -Cathy
Emma's "normal" when she's awake is around 94-97. Her "normal" when she's asleep, I guess, is in the upper 80's. Weird. Anyway, we're aiming at upper 90's asleep or awake. Hoping this will give her lungs a bit of a rest before her open heart. I think the cannula is working, but blow-by is another idea, thanks!
Ok, what about "No-No's". They're what kids wear after they've had facial surgeries so they don't mess with their wounds. It's a splint that you put on their arms so they can't bend their arms to their face. They're easy to take on-off. They're not the most pleasant thing, but at least she couldn't mess with the tubing! My friend's daughter had many surgeries to repair a cleft lip/palate, and she always had these on for several weeks after surgery, even while awake and running around. -Leah
No, we don't want to go that far. I think with everything she's got going on that that might just be her undoing.
I'd ask - does she absolutely need it? My son would always pull it out, and in retrospect I can see that he DIDN'T need it. -Annie
Unfortunately, until her surgery (at least) yes, she really needs it. Her sats being so low will make the heart and lungs work even harder. Which she likely has been experiencing her entire life- or at least recent years- but doing the O2 will help give her body a bit of a rest before her big operation.
I don't have a whole lot of experience with O2 and kids, but I know a lot of older adults who don't breathe in/out through their nose, and so they put the tube in their mouth so that they're actually getting the Oxygen. Any chance that's what she's doing? Good luck! -Erin & Scott
I'd love if Emma "got it" enough to do that, but unfortunately she just doesn't want it by her nose. And, she likes to chew, so that works to her advantage too :)
If you move Emma's crib to the guest room, can you put the O2 tank in the guest bathroom, then it would out of the way and the heat would be just in the bathroom. I have an extra tower fan if you need to use it in the guest room.(You would have a nicer bed to sleep in also.) -Mom C
Unfortunately, I think the 'nicer bed' would have to go for the crib to fit in there. I think we found our solution for now with the compressor in the family room. I really like having the girls together. Thanks for offering the fan!
How long is the tubing from the compressor? When my father was on oxygen his tubing was so long he could go anywhere in his apartment with the tubing. We left the compressor in the living room and he walked around with the tubing. Ask and try a longer tubing. -Robyn
Thanks, we added the extension and have it in the family room for now. The tubing makes it to the bedroom and the guest room (she naps in a playpen in there) so it seems to work for now.
Also, check to make sure the oxygen is not drying her little nose out too much, that is really uncomfortable. -Anonymous
We have a little device hooked on to the compressor that hydrates the air. It's like a little mini humidifier so her nose won't get raw.
Maybe try to put two O2 tubings on her. One in her nose, and the other, one that she has already ruined, in her mouth to chew on. Maybe it will confuse her enough to allow the nasal one stay. Just a thought.If she keeps dropping, they may want to consider a mask. Or, one thing you may want to consider, short term, is asking for nursing care at night so you can sleep. - Mary
Interesting idea with the two tubes. I think she'd enjoy chewing on both if that's what got it out of her nose though! I don't know about nursing care- As soon as Emma decides that the O2's not such a big deal I think things will be nice and calm again :)
Man, that sounds like such a fun night-NOT! I hope you're sleeping in a bit this morning to make up for your middle of the night adventure. -Cathy
Ah... if only... :)
That just doesn't sound right. She isn't doing it anymore right? That is so scary. I would of been on the phone to 911. -Gayla
Yeah, I guess this happens occasionally. One 45 minute bleed and she was done. Seems much better today too so I guess that's a good thing!
Wow, Micah has made AMAZING progress since he has been home! When you get a chance, you should post a video of Micah crawling. :) - Annie
I'm trying! I posted a quick one, but he just is beginning to use it so it's hard to catch. I'll keep working on that tho :)
I'm sorry we didn't get to meet up this week(though it seems that you were definately a little busy for visitors). -Christina
Yes, unfortunately a crazy week. Can't wait to see you in a few weeks tho!
Does M (or did B) scoot on their bottoms by bouncing? -April
Yes! Brianna scoots on her bottom still to get around. Not exactly bouncing, but she uses her hands (my little gorilla!) She is QUICK too!
Aww, so peaceful! (sleeping pics) How long does that last? :) -Bethany
ALL NIGHT LONG if we're lucky :)
Is Emma sleeping much quieter now? -Anonymous fun! She's not snoring as loud! And I don't know why the formatting changed... weird
Love the glasses! Welcome to the club. :o) They're right when they say consistency at the beginning makes ALL the difference. But I'm not saying it's fun! -RK
Thanks for the tip! I will try!!
That ball was my son Tommy's favorite too! We saw your name on the Multiples with Ds board and glad that you found that group. Our twins are 18 mos old, Tommy has Ds and Liam is typical. We really enjoy your webpage. You are so good with your updates! -Tommy's mommy
I read on that boad but rarely reply. Micah LOVES the ball! I read your blog too ;)
I'm curious: How did they determine the prescriptions for Emma and Micha's glasses? -Sharon
At the opthalmologist they dilated both kids' eyes then looked inside. Whatever is supposed to line up didn't, and the Dr. held up different lenses while looking into the eye until he got the one that corrected the alignment best. Pretty neat, isn't it?
What are their prescriptions? -Bethany
Emma is nearsighted but just a little- weird because she acts like she can't see anything and when we put them on her she was SO interested in looking around! She also has congenital horizontal nystagmus and strabismus. Micah is far sighted and has astigmatism. And if you meant the ACTUAL scripts, Emma's says -1.5 sphere X for OD and OS. Micah's says OD: +1.00 +1.75 x90 and OS: +2.50 +1.75 X 105. NO IDEA what those mean :) LOL