Sunday, June 17, 2007

Camping a l'Hôpital

Michaela (our 3 year old with HLHS) is still in the hospital (3 weeks now). Since my last posting, she has bounced back to ICU 2 more times and the stay has not been jolly. It has been decided that she has Paradoxical Vocal Cord Dysfunction. The paradox is that there is no physiological reason for her to have difficulty breathing or swallowing, however a serious problem persists such that her Oxygen Saturations drop to about 40% and her heart rate climbs to 160 bpm.

Basically, this is a psychosomatic condition that is induced by stress, anxiety or aggitation. While some people clench or grind their teeth involuntarily due to stress, she closes off her vocal cords thereby restricting the flow of air into her lungs. The Ears/Nose/Throat Docs wanted to either permanantly paralyze a vocal cord or leave her with a Tracheostomy to overcome this problem, thinking psychotherapy ineffective for her now. Our answer was "absolutley not". First, neither "fix" the problem, and second, both are fraught with major risks of their own and severely reduce her quality-of-life (no voice, lifelong feeding by tube...)

Our goal was for her to get out of the hospital environment ASAP (thereby eliminating the major source of stress) and go from there; Yoga for Kids, and the like. Well, all this has been the brief description of the saga here, but I'm sure you can understand that it has not been easy. Ironically, however, the heart surgery portion of this stay has been's just this "other" stuff that has come up in the meantime to make this a miserable experience. How much of home repair is like this, I ponder.....

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At June 17, 2007 4:46 PM, Anonymous lioness321 said...

Sorry to hear that you are having to deal with PVCD on top of everything else! In older children it is relatively easy to deal with via speech therapy and breathing/relaxation exercises. I think you're on the right track with the yoga, but you might want to find a speech therapist with expertise in VCD as well to see if they think they can help. You might want to check out my blog where I'm blogging my 13yo son's experience with VCD. Very different from your situation, of course, but I have several links to VCD resources, some of which may be helpful to you.

At June 17, 2007 8:28 PM, Anonymous lioness321 said...

One other thought I of for you is that hypnosis has been used with some success for VCD. Mostly in older children, but I found one article suggesting that it may be possible even in children under 5yo. These guys are in upstate NY, quite a ways from you, but you might be able to find someone locally to try this with her if it sounds like it has potential to you:

Identification of children who may benefit from self-hypnosis at a pediatric pulmonary center

Hypnosis in pediatrics: applications at a pediatric pulmonary center

Hope this helps, and hope Michaela is doing much better soon!

At June 18, 2007 7:57 AM, Blogger Oblio70 said...

lioness321: Thank you very much for your suggestions. Actually, she already has a Speech Therapist that she was worked with for about a year now, and as he read what she was going through, his thoughts were PVCD before ENT uttered them. WDYK?

Anyways, it was because ENT didn't think Michaela was old enough for learn to control her "panic attacks" that the opted for the more drastic surgical approach. The fact is, the hospital is the only time she has exhibited this level of anxiety before. Anyways, thanks for the resources.

Part of the difficulty has been ENT's unfamiliarity to deal with VCD in a child so young. Apparently, it just doesn't happen, or at least, all that often.


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