Monday, July 21, 2008

Disappointing day re hearing

After a very early start, we enter into a darkened and humid sound booth. Behavioural hearing tests are used with children who are able to respond to sounds either by turning their heads. There were two evaluators, an audiologist outside the sound booth monitoring the testing and another one inside who plays games with Reuben whilst he sits on my lap.

Behavioural tests offer three important types of information. They measure the degree of hearing loss. They also assist in locating the source of the problem. These tests can also indicate how the hearing loss will affect Reuben's ability to communicate. The threshold test measured the quietest tones or speech that Reuben is able to hear.

A pink elephant lights up the left hand corner of the room in a glass case and is accompanied by a beep, part of the process of conditioning Reuben to look to the left when he hears the sound with the expectation of watching the pink, dancing elephant light up. Once conditioned (trained), Reuben will be distracted to midline by the audiologist who is moving her hands and playing with toys and then only the sound will emanate from the left hand side, with the expectation that, at different frequencies, Reuben will turn his head to the left awaiting the pink elephant, which incidentally doesn't light up because we want him to respond to sound, not visual clues.

It's hot in the booth and Reuben is his usual attentive self, is congratulated on his good listening skills, yet as he turns his head to the left upon hearing he beep, she is not always sure if he is or isn't responding to the actual sound, or indeed, he is just anticipating the pink elephant because that 's what he's been conditioned to do. As such, the audiologist says yes or no through her headphones to the audiolist outside the booth and Reuben's response is thus gaged. I would deduce it's a slightly subjective test at his age given the environmental factors causing Reuben to heat up, start to sweat and thus want to be comforted by me.

I leave with a sad and heavy heart from the behavioural test, so sure in my convictions that his hearing had improved upon the surgical installation of PE tubes/grommits in his ears and yet it appears he is still moderately-severely deaf in his left ear and profoundly (completely) deaf in his right ear. The left loss is conductive, meaning there is damage to the ear canals. The right loss is likely sensorineural, with damage to the auditory nerve or cochlear. All these interventions to normal everyday life, the feeding tube, the hearing aid, the trach, the ever present threat of his daily vomiting due to chronic reflux, the necessity to be accompanied by a nurse in the car, the fact that hearing is only one of 15 other medical disciplines that Reuben requires, some critical (heart, lungs, throat), some developmental (gross motor, fine motor, speech); it's very very tough. Thanks CHARGE for making things so monumentally tough.

Upon leaving, I manage to get hold of Sheila, the pulmonary trach nurse as we've been concerned about the size of the fibroma (callous) developing around Reuben's trach. Whilst we could use the opportunity of next week's Urology surgery under general anaesthesia to have the fibroma quarterised, Sheila does not think it necessary unless the fibroma is interfering with our weekly trach changes at home. Something to continue to monitor though.

Turning the corner, I bump into none other than Dr Kevin Madden previously from the NICU and PICU, one of our very favourite Drs who once diffused a very difficult situation and comforted me upon our learning that (apparently) Dr Starnes did not wish to operate on Reuben's heart. That of course was hearsay and incorrect. And it was Dr Kevin I turned to after I had the miscarriage in September despite being transfered to another part of the hospital with Reuben. It was like seeing an old friend again, very joyous. Our plans to meet up in the last few months haven't happened, so what a great surprise. I had wanted to see Dylan again but was rushing to get to the other side of town for Reuben's occupational therapy and feeding appointment. And then Cassandra in happy, sunny yellow, doting mum Naomi and Dylan in his Bugaboo turn the corner just as I'm saying bye to Dr Kevin (who does of course get a review of Reuben's signs). Dylan is getting ready for going home after his colostomy reversal, his family having diligently taken it in turns to sleep in the chair beside his bed for the last 10 days. I can't overestimate how difficult that is to do, how much it wears on you and yet seeing Cassandra and Naomi looking so fresh, it is hard to imagine the toll that the last 10 days must have taken on them.

Arriving at OT an hour late, Juliana graciously fits us in for what turns out to be a wonderful session with Reuben. He's swinging on the giant swing in prone position, to and fro and loving it. She's tough on him, further encouraging him to stretch, active his lower toned right side muscles. It's always quite a work out for me too, rolling around on the therapy mats and as my stomach muscles have taken a slide and a huge bump is manifesting itself in front of me, it's getting harder. In the car, I give him his first ever bottle of milk from a sippy cup and he swallows an ounce. That's progress until of course he realises it's far more fun making bubbles with the milk and spitting it out than swallowing it. Funny that; a baby's first milk bottle at 14 months.

We get home, do a signing review, watch a signing video together with Reuben quickly picking up Wash hands and Train and then play. We've never used video as a babysitter for Reuben. We will only watch videos after his feeds in an attempt to prevent a throw up and I feel unless you're actually there signing with a baby, then they're unlikely to learn. I feel better for it; his signing is the highlight of my day, though by the time Jason returns from work at 4pm (he's working from 6am now to allow me to get some rest when the day nurse leaves and he gets back from work), I sleep fitfully for 2hrs. Pregnancy is starting to feel exhausting.


MK said...

great update, thanks for sharing. I agree that the sound booth is both subjective and somewhat intmidating for such young boys. We are due back again for Lucas soon. How encouraging to hear about Reu's milk adventures, only wish Lucas could find it fun at all. He seemed to be going that direction and must have gotten over stimulated at ST last week becuase since then he has somewhat shut down. Tell the boys hi from the weindorfs!!

ellen charge said...

wow lots happening sounds great to bad bout the hearing his hearing is liek mine tho very simila i think