I should start from the beginning.
Friday we were introduced to our new friend, Oxygen.
It didn't take long for her to realize that somehow this would all involve her. She was not thrilled.
Sara tried to help ease Lyla in to wearing her nasal cannula.
Still trying. A nice pat on the back should do it!!!
Sweet Belle even tried.
Okay, maybe Belle was a tad aggressive.
The above picture clearly shows how Lyla feels about her oxygen. Poor Love!!!
AH HA - Then Day Two when Lyla fell asleep right next to the big ole O2 machine we had some success!!!
Last night Lyla was becoming a little more comfortable with the tubing.
My Sweet Beautiful Girl!!!! Huge success with the oxygen going right in her mouth!! YAY!!!! Not quite the way the cannula is intended to be used but we will TAKE IT!!!!
Sadly I have to admit this is really what is going on majority of the time. See the tubing right next to her??? Well that is definitely where she prefers to have it!! Lyla is suppose to wear the O2 ALL THE TIME!!! OH MY!!!!
Here is the biggest issue. When Lyla cries she sometimes can get so upset that she turns blue. Now, when I say blue, I really mean BLUE!!!! Like not breathing at all BLUE!!! I had never experienced "blue" until Lyla - that is a fact!!! Dr. Leonard told us every time she turns blue she is doing more damage so we try desperately not to let her get real upset. So when I tried putting the nasal cannula on her the first time I held her down. She got so upset she turned BLUE. UGH!!!!!
Our new plan is just to introduce the whole thing slowly. The fact that she will now put it in her mouth is so AWESOME!!!
A Mom of a little one once on oxygen told me about tender grip adhesive.
I think this will be a huge help. I will call the oxygen supply company to see if they carry these tomorrow.
Then, the great Molly Conley recommended Blow By Bear:
This will be great at night!!! Molly also suggested having the other kids wear the nasal canula !! FABULOUS IDEA!!!! Oh I can't wait for Molly to adopt!!! Obviously she is going to be one heck of an amazing Mommy!!!!
Another great piece of advice from my Aunt Ann was "tiny steps"!! She couldn't be more right!!
I am so grateful that I have so many wonderful friends willing to help with advice!!!
If you have any advice for me regarding this battle with O2, PLEASE LEAVE A COMMENT!!!! I will take all the advice I can get!!!! THANK YOU SO MUCH!!!!!!!
Would she use a mask better? They make ones like cute dinosaurs. My son thought this was way cooler. The tape is a good idea but my son has super sensitive skin and can't. The thing that helped most with him is trimming just a tad off the ends of the nasal cannulas. Sometimes the pediatric ones are still long especially for tiny noses. Hope this helps :)
ReplyDeleteThank you so much!!! Yes, trimming the tubing has helped. We are now able to get it close to her nose now!!! THANK YOU!!!!! Baby steps!! I am concerned about her skin too. When she was on the breathing tube for her cardiac cath her face bled from where they removed the tape :(
DeleteKeep on trucking, my dear! You can do it!
ReplyDeletePerhaps putting it on once she is asleep and then using the tender grip adhesive so that it's less of a fight to get it on?
ReplyDeleteYes, as soon as we get the adhesive we are going to try this very thing!! Praying it works!!!
DeleteLook up cealum cannula cap on esty it is a cap that help holds the tubing in place and are cute
ReplyDeleteThese are great!!!! Woo Hoo!!! Thank you!!! I just sent an e/m to the gal that makes these caps!!!
DeleteMaybe you could put a similar mask on a favorite doll or stuffed animal and then tell her she is helping the doll by wearing the mask like they are
ReplyDeleteYou've been given GREAT advice in the previous comments. I especially like the idea of trimming the tips and having dolls and siblings join in the experience. I know the canula can tickle, irritate and dry out the nasal passages. Possibly some saline drops to help keep them moist?
ReplyDeleteMy 5 year old is a former 26 week micro preemie with several cardiac conditions. Almost 3 years ago just before her heart cath, mitral valve repair (that resulted in a mechanical valve and a pacemaker) she wound up with Bronchiolitis and ultimately was hospitalized for a partially collapased lung. I remember feeling so defeated that my tiny daughter with a weak heart and compromised lungs needed the intervention of a nebulizer, but REFUSED to wear the mask. Her Pulmnologist said the blow by wand wasn't enough- she had to wear the secure mask. Didn't matter how cute the penguin nebulizer was. Every time I tried to put the mask on her she would throw a massive fit and her breathing would become even more rough. It was quite the catch 22 to have the medical intervention that was supposed to help, cause her more distress. Finally the only thing I could do was put her in the minivan in her car seat with the nebulizer running (without meds, but just so the noise was already going), drive around until she fell asleep, pull over, keep the van running, puts the meds in the nebulizer and slip the mask on her sleeping face. Yeah, that wasn't very practical for every 4 hours.....
Fortunately we've only had to have at home O2 once in 5 years. And she was older and more tolerant. Praying for your sweet princess and your family. Praying she gets stronger and the surgery next year brings all kinds of new blessings and health.