Thank goodness for Little Suckers!

[TommysMommy]

Boy, that thing sure came in handy a few minutes ago! Tommy is wearing his PMV. He's still having a hard time figuring out what to do with his secretions. This time, he had them coming out his mouth and nose. I tried wiping them away and not making a big deal, but this time he had way more than he could manage.

I ended up pulling the PMV, suctioning his nose, mouth and trach! He had secretions coming from everywhere except his eyes, lol! My goodness, I hope he figures out what to do soon or we will never move on to capping! He will do fine for about an hour or two and then need to cough. After he's over the spell, I am putting the PMV right back on. He doesn't like it at all, but if he's tolerating it and just mad at me, then he's okay to wear it as long as he's awake. I normally don't take the PMV off for coughing, but this time I had to take it off so he'd have an airway while I cleaned out his nose and mouth. He was turning quite blue, even for him!

I feel kind of mean, but how else will he learn to wear it unless he WEARS it??? He's satting fine and has great coloring between spells. One thing I'm upset about, but patiently waiting on is I'm not hearing any sounds. Just little gutteral cries when he's coughing. Even when he laughs, he opens his mouth and say's "ha ha", but only air is coming out, no sounds.

[KJKK8437]

I felt horrible when we were at the same time frame you are. I have a video of Alex that we took for a therapist. It was late at night, on a tired day for him, and I am terrified to post it lest people think I was abusing the baby! He looked so tortured!

But, my real point is that it is very hard to watch them, and you do feel mean. We got strength from our social worker/therapist who came to see Alex and try to help with his anxiety. She told us that she was amazed at how well we were handling the situation and she knew how hard it was to see our son so unhappy. In the end, though, she said it was our "meanness" and our refusal to rescue him from discomfort that pushed us through to where Alex could use his valve effectively.

I wouldn't be surprised if the secretion issue might take two or three more weeks before he finally figures it out or before the PMV starts to help him decrease the amount. But, seeing how fast Tommy has worked so far, he'll be over it all by tomorrow!

Anyway, you aren't mean, Rene, no matter how mean you feel. This is one of those moments that no parent that isn't in our "club" of trach parents can really understand. Sometimes you just have to let them struggle a little to make it better in the end. We want to sve them from discomfort, but it isn't in their best interest. Using their natural airway is what is best, as soon as it is safe for them to do so, and that takes time and a bit of discomfort.

Keep up the fabulous work. Tommy looks great, and he'll never remember how hard it was at first. Some day very soon he'll get mad at you for taking it off, like Alex gets mad at me. (Oh, and no hard sounds from Alex yet -- just constant voice modulation. Our progression went -- constant crying, then guttaral sounds, then constand "singing" or voice modulation. We only recently heard squeals -- no laughter yet. Our speech therapist is coming back next week to try to help him figure out that if he changes the shape of his mouth, he can make different sounds.)

PS -- Alex is helping me type, so I apologize if I've missed any typos.

Oh -- PPS -- we had a nurse a while ago that was GREAT with PMVs. She said she used mirrors and bubble blowing with her kids to help them realize what they could do. Neither worked well with Alex, but I think it is a great idea.)

[TommysMommy]

I'm beginning to wonder if we're doing things backwards for Tommy. Should he learn to swallow first or how to breathe with his natural airway first. Tommy is unique because we will never know if he can eat by mouth. Up until this point, his swallow study says its okay, but with the new airway, his doctors and I are concerned with aspirating.

I feel so lost because Tommy doesn't have just airway issues, but swallowing issues. He was trached because his secretions "drown" him and that is what I'm seeing when he wears the PMV. I KNOW he can do this, but I think Tommy and I are both scared right now. Why would he have 100% control over his secretions a month ago, then we give him a new airway and he's a faucet again?

[JWorthington]

Oh my Rene, I sense your frustration. All our kids are different - Sam will now tolerate the pmv for 6 hours but still no sounds apart from when he laughs or cries. Our ST says it is neurological ( he was trached at 19 months, just learning to speak) so we are going back to babytalk and it's tough. The secretions do improve over time

Juliexxx

[alizesmom]

Rene, I wish I could give you advice to help. I'm not sure which I would choose (airway vs swallowing). Good luck and sending hugs/prayers. Karen

[Ainsley's Mom]

Sometimes I think it takes them a little time to figure out the talking thing. Imagine not being able to make sound and then all of a sudden you could. Would you know how? Would you want to after not needing to for 1 1/2 years? It's not been very long since his LTP. I think you just need to give it a little more time. It's tough to figure out (the PMV, aspiration which to do first thing). I've been there. Try not to drive yourself crazy. It'll come in time.