Saturday, September 19, 2009

Heavens almighty!

Came off the phone today having spent maybe 2 hrs on Skype speaking to my family for Mum's birthday, all there, both brothers, both sisters, brother and sister in laws, and all the nieces at Mum and Dad's. A house of 14 for dinner. How delighted mum is!!! How I wish I were celebrating with them.

I've been tidying up the playroom and I'm sitting down with Reuben. He's getting into a bad habit of putting his Passy-Muir speaking valve in his mouth. The PMV is simply a one way valve through which Reuben can breathe through and into his trach, but it does not allow exhaled air to pass, with the result that exhaled air is pushed up past his vocal chords and out of the nose and mouth, thus creating sound. He's on my knee and as with each time I work on communication, his head is up against my mouth so that he can hear me more clearly through his left ear. And it is at this point that I can feel, but I can't quite be sure, some air from his nose and mouth. So I start to think about speech. What sounds would encourage the most air to be pushed out from his nose and mouth. What might be the best sound for him to make to encourage a large exhalation of air. Well, "h", the sound of breathing, I start to think as in "ha, ha, ha", rapid breathing. That forces air out of your mouth. So I sit Reuben on my knees directly facing me with his legs straddled and I start this rapid breathing exercise I've made up just now trying to get him to make an "h" sound. And he does, without his speaking valve. And then I push my luck and cap his trach with my finger without breaking the rhythm of the two of us doing "ha, ha, ha" rapid breathing so that he won't be too aware of me making the change and him thus adapting his breathing from the trach to the mouth. And sure enough, out pops "ha" and in he breathes and these are the first breaths he has taken independently through his mouth for over 2 years. On the 6 failed extubation attempts from the ventilator, there was no passage of air from his nose and mouth. And I push my luck still further: he's really enjoying myself, audibly laughing without the speaking valve and whilst focusing on me, unperturbed that I'm blocking his trach with my finger, or rather he is aware of that, because he keeps imitating me and doing it himself and giggling to himself. What what I mean is that he's forgotten he breathes through his trach and that for me to block it is a bad thing if the object is to breathe. And I want to hear that magic word, his first ever word back in July with the speech valve. And I say "Ma, ma, ma, Mama" and he tries really hard and nothing comes out, and I continue to cap his trach and he looks me straight in the eye and then as if by magic, he breathes and exhales and with that exhalation I hear "Mama".

He rarely wants to imitate what I'm saying to him in words, but further still I push. Jason has since been summoned because I'm hopping mad with excitement and in the same way, I mouth and clearly enunciate "Dada" to him and silent mouthing sounds, deeper breathes, harder exhalation and "Dada".

How has he been so calm within as to rechannel at a moment's notice his exhaled air without the benefit of the PMV through his nose and mouth? The important point is that although a child can learn to cover the hole when exhaling to allow vocalisation and then uncovering when they need to take another breathe, I am continually covering the hole in the above experiment for longer than Reuben would be able to hold his breath! Thus, he must be breathing through his larynx again...


TiaChica said...

That is such fabulous news! Wow!

Candi said...

I think this is wonderful news Catherine, and that Reuben is on his way! Luke is still a possible candidate for an LTP, and one of his friends at school had one in the spring. I think there comes a point when the doctors have to weigh the benefits of being trach free (feeding, speech, etc.) against the risks of another surgery then decide which is the best thing to do. Also, it seems like they give kids a certain amount of time to see how much growth will help, but if there is still no resolution move on to an LTP. Most of the kids we know have their LTPs somewhere around 2-3. I would think you should come out of this bronch with a plan - either to try capping or with surgery planned. If you don't and the doctor doesn't give you a good reason, I would want a second opinion - at least someone else to review Reuben's records. It sounds like with how well things are going that you might try capping first - that would be great! If Reu does need an LTP I can point you to some good blogs about the experience.

Luke's doctor considers his stenosis borderline. And to complicate matters his nose just won't stay open. He is having dilations every 6 weeks and (when healthy) can wear the cap all day. His next surgery is Oct. 8 (just like Reu) and a week after that he is having a capped sleep study. We planned to do it last week, but either his nose closed back down or he was beginning to get sick (which he is right now), but he just wouldn't tolerate the cap while asleep. We had one good week in there (between surgery and sickness) when Luke wore his cap well all day including naps. So I am still hopeful that he could be decanned without a reconstruction if his nose would just stay open. We are meeting his doctor next week to discuss everything.

I would just keep letting Reuben explore being plugged - he will let you know if it is a problem. When Luke was first capped he would only tolerate it for a minute or 2. He screamed and cried to have it off, but by the end of that week he was wearing it for hours. So it seems like a good sign to me that Reuben responded so well to you plugging his trach. I bet you can't wait for the 8th - good news might be just around the corner!

Sara, Julianne & Rachel said...

That sounds to me like really good news. Go Reu!

Debra said...

Two words: Observation and experimentation = two more words: Mama and Dada. Glorious dedication and love Catherine. Thanks be to God!

Leslie, Arlin and Katie Kauffman said...

This is so exciting, Catherine! How sweet it must have been to your ears!

Geraldine said...

Hi Cate,

What an incredible achievement and it's all physical possible, just the little mental block of fear of the unknown. What great things he will go onto achieve.
He looks beautiful climbing the stairs.!

Was great to speak to you and see the boys on Saturday. Tricky cooking a fresh Thai Green Curry for 14 people but it was delish.!

Had my lapo and first day back to work today!


Kristi said...

Dare I say it, Catherine...?!
I told you so!!!!
Remember how I used to say, "Yet," in regards to Reuben using his voice...
And now, this development... is so far beyond the initial hopes of hearing his sweet voice... this shows so much promise for decannulation... Someday!
Will be thinking of you so closely on that day in October!

With love,