Missed you all

[Myself]

I have thought of you all, so much stuff going on at home right now it is just so hard to talk about.
Susan thanks for being my sounding board when I absolutely felt I was going crazy and everything I ever knew how to be just slipped away.
On to a somewhat lighter note.

Gage had an oximetry test tonight while capped.
His Sats dipped to 80, 81 and linger around 83.
I moved the probe to his finger as I had it on his big toe.
I thought it was going to make a difference......
How can he do so well during the day and plummet at night?
What would our next step be?
Going on year six with the trach, I thought they promised us he would only need it for one-two years?
Dude I have been around go almost six times and collected my $200, I don't want to play anymore.

[Ainsley's Mom]

Hang in there Lisa! I'm sorry it' come to this. You know 2 years ago we started out chatting about Gage's medical conditions and it turned out we had certain things in common. I wish we lived closer.....

I will always be happy to help in whatever way I can with thinking through Gage's medical stuff. I am so sorry that things didn't go better with his overnight observation. Since he isn't normally on a monitor I'm not sure what his typical sleeping sats are when he's breathing through his trach but if I recall you said they are in the 80's. Exactly how many points lower are they when capped vs not? And what does he look like? Is he sleeping well? Comfortable? How does he sound?

What I know you don't want to hear but need to, is that day time capping success does not equate to night time capping success. Kids with airway issues and other medical issues are going to be more prone to having Obstructive Sleep Apnea than your average child. Something in their airway obstructs while sleeping due to decreased muscle tone. It can be as simple as the tongue falling back. The vocal cords can obstruct or the nasal palate can relax and constrict.

The other thing to remember is that he does have a cannula in his airway. Though I think he was downsized so it's not too big. So he could do better trach free. The only way to really know for sure is to decannulate and see how he does. But because he has low tone and a nasoendoscopy shows decreased movement of the vocal cords he is probably going to have a harder time while he sleeps. He may be compensating for some difficulty while awake but can't while asleep. Now that he's capping so well it might be worth asking for another nasoendoscopy while capped so the ENT can really see what's going on down there at the vocal folds. My hope is things have improved and he looks better than last year. The doc should be pretty impressed that he's been capping.

The other thing you could do is inquire about CPAP. And you could ask for them to do a true sleep study at a sleep center to see:
1) How bad is the OSA (remember he HAS to be capped during the study for it to tell you what you need to know). You need the sensors to the brain, chest legs etc. This isn't just a pulse-ox in the hospital during sleep.
2) How well does he respond to CPAP? During the SS they start with none, then at the lowest setting, see how the child sleeps, increase if needed, repeat until they find the setting that gets the child into the "normal" range of sleep disturbances. If he does well with a low to moderate CPAP settings he might be a candidate for decannulation with CPAP, especially if nasal prongs or a nasal mask work for him.

We did a SS for Ainsley in November. The results though weren't good. (Ainsley needed a full face mask and high settings.) And then you know from the blog about all the Cincinnati stuff. So the situations aren't exactly the same, I think Gage does better than Ainsley with his cap, but there are some similarities. In our case her airway is good enough to cap during the day(most of the time and depending on trach size) but it's not good enough for sleep, maybe never will be. Though I am eager to see the results of the tonsillectomies she's having next Monday.

It is frustrating to be so close and yet still have obstacles.

[IzzyB]

I agree, I think I would get a full sleep study. They give you so much more information than just a pulse ox. They tell you if they are having apnea and how well they are sleeping. This information can be so useful to diagnose what is happening with your LO during sleep.

[Linnae's Mom]

Maybe you could have a sleep study and cap half of the night and uncap the other half--this would allow you to compare and see how much of a difference capping makes. Hugs to you...

[Caleb'sMom]

missed you too Lisa!

[Ainsley's Mom]

Originally Posted by Linnae's Mom

Maybe you could have a sleep study and cap half of the night and uncap the other half--this would allow you to compare and see how much of a difference capping makes. Hugs to you...

Yes! Jennifer is right. It would be good to get that data as well. Just make sure that a portion of the study is capped and that they try CPAP if/when he runs into difficulty.

[Christamae]

I used a bipap for sleep apnea (weak muscles) starting age 9. I used a mask/nasal pillows. then by age 11, I switched to a vent (lp-10) with nasal pillows NO trach. You can do non-invasive ventilation. Something to keep in mind.

[Ainsley's Mom]

Originally Posted by Christamae

I used a bipap for sleep apnea (weak muscles) starting age 9. I used a mask/nasal pillows. then by age 11, I switched to a vent (lp-10) with nasal pillows NO trach. You can do non-invasive ventilation. Something to keep in mind.

Christamae how old were you when you were trached? Also do you/did you mouth breathe? That's why we had to use the full face mask. The air just blew in the nose and out the mouth(ineffective) and she hated the feeling. Ainsley has a bad bite so it makes takes effort for her to close her mouth.