These are pictures of Ricky after his stage two operation.  We didn't have a camera after stage one, unfortunately.







Ricky is one of a set of twin boys who were born prematurely.  I was barely into the 32 week of my pregnancy when they were born.  The oldest twin by 12 minutes is Christian, who weighed in at 4 lbs 7ozs.  He had a little jaundice, needed to be fed through a tube for a little bit but otherwise was healthy.  Ricky  weighed in at 4 lbs 4 ozs, and was having heart problems while I was delivering.  He arrived blue, not breathing at all, and was quickly waved in front of me before being whisked away.  When I saw him an hour later, he was hooked up to all kinds of contraptions.  Luckily I was well read on complications that a twin birth poses, so I wasn't too much in shock.  He was born with a minor birth defect, microtia (one of his ears didn't develop and he has the cutest little bud instead!) and atresia (no ear canal).  He required a minor operation (I say that lightly now, though at the time I was rather frantic, particularly when it was over and the nurse admitted that they had "lost" him for a minute when they transferred him to the operating table!) survived a blood infections, and had to learn to breathe without a ventilator, but my little scrapper finally made it home about a week before he was due to be born!  I thought that the hurdles were over, we'd go home and have beautiful, normal little babies.  Couldn't have been more wrong.

They reached all their milestones late.....actually, Ricky still hasn't reached some.  My family doctor didn't see a problem, but when they were a year old and still not sitting independently, I knew something was up.  I self referred us to a regional program that helped a lot.  Physiotherapists visited the house for years, working with the boys.  At 1 1/2 Chris finally started to walk, Ricky didn't until he was 3.  We were referred to a daycare program that had resources for special needs kids, and what a difference that made.  At 2 1/2 I couldn't get the twins to eat anything solid, they had an aversion for textures.  The daycare got them to eat real food, though I guess it was quite a fight.  Once Chris was mobile, and eating, he developed closer to his age level.  Ricky on the other hand, wasn't developing well.  He wouldn't make eye contact, couldn't talk or communicate except for crying, and wouldn't interact with the other kids at all.  He had ear infections, his first at 8 months old, and they got worse and worse.  The specialist put tubes in finally, which worked for about 6 months.  Once the tube fell out, the infections got worse and worse.  His ear leaked a yellow, foul smelling discharge.  The specialist prescribed drops.  They didn't work, so he figured that there was so much discharge that the drops weren't getting to the source of the infection.  Much to my discomfort (you aren't supposed to stick things in your child's ears, right?) the specialist showed me how to twist a tissue, insert it in the ear canal to absorb the discharge, then put the drops in.  This didn't work either, and the specialist insisted that I wasn't doing it right, it was my fault that the infection wouldn't clear up.

Fortunately for us, we got hooked up with the one of the leading ENT's in Toronto.  This wonderful Doctor took one quick look and sniff at the ear, and was pretty confident that Ricky had cholesteatoma.  Within two weeks Ricky was back for an CAT scan to see if that was the problem, where it was and what needed to be done.  Two weeks after that we were back in for surgery that removed the cholesteatoma (tumor like growth behind the eardrum) and some diseased mastoid bone (skull bone).
Cholesteatoma has to progress for some time to cause the mastoid bone to be diseased, and his had.  Unfortunately, Ricky also lost two of the three bones in his inner ear that allow him to hear.  Between the cholesteatoma and microtia, my son now had a hearing loss.  Around the same time he was also diagnosed with Pervasive Developmental Disorder (PDD) which means he has some autistic tendencies but not severe enough to actually be called autism.

Luckily the hospital set us up with a bone conduction hearing aid, with the idea that a BAHA would come after Ricky had progressed a little more.  The bone conduction aid was tricky at first, we opted to tape it on instead of using a headband which would cause pressure on an already tender head.  The hearing aid practisioner that I went through was brand new to the bone conduction aid, so it was a learning experience for all of us.  Ricky used his BCA for 3 1/2 years, when we finally decided to try the BAHA.

The first BAHA surgery was a little nerve wracking for Mom.  The cholesteatoma surgery was bad enough, but it was a life threatening condition that needed to be looked after.  The BAHA one was a voluntary procedure that I had made a decision on.  Somehow, that made it worse, knowing I was putting him through this.  We signed into the hospital at 7 am and waited.  We were finally sent to another room where he got to put on the cute little pj's, then sat and waited again.  Then they took us to the OR waiting room, where I could speak to the doctors and nurses.  They explain the procedure, ask the child what "smell" they'd like their mask to be, and when it's time, they take the child into the OR.  Then I went next door to the parents waiting room to wait.  The procedure was fairly fast, I think it took about 1 1/2 hours between the time they took him in until they came to get me.  He woke up groggy, and cranky, like he always does from anesthetic.  Once he was awake, he had a freezie, then a cup of orange juice, and was ready to go home!  We had to wait in recovery for a bit until his vital signs were normal, then went to hospital room.  Ricky was up and at 'em, I couldn't keep him in bed.  We hung out in the playroom for about an hour, then Ricky started to feel a bit woozy.  We rushed back to his room, but unfortunately, he didn't make it and up came the OJ, all over the floor!  He was so embarrassed he started to cry!  The nurse and I had him lie in bed for a while watching cartoons, then once he felt better he was back in the playroom.  About two hours later, a doctor wrote a prescription for antibiotics, told me to keep it dry, then checked him out and sent us home!

We returned in a week to have the stitch removed, which took all of 2 seconds.  They cleaned it up, and we scheduled the next appointment for stage 2.

I was a little disappointed that we would have to wait until fall, I was hoping he'd get his new aid before Christmas.  The second stage seemed a little more difficult than the first, but probably due to the timing of the operation more than anything.  We were scheduled for a 1 pm operation, but somehow it got pushed back until 4 pm.  Anyone who has had a child in for surgery knows that the kid usually eats their supper the night before, maybe a drink before bed and that's it....they have to fast.  I've never waken my kid up at 11:30 at night to shove food into them, but I wish I had that time!  I'll just say that starving a kid who can't talk and can't understand is the most miserable thing to do.....he now has a nightly habit of saying "Good Night, Cereal Tomorrow?" to be reassured that he isn't having an operation.  Pretty sad, huh?  Anyway, the surgery was fairly quick, but we had to stay overnight in the hospital.  Ricky slept almost the whole night long, waking up momentarily to take a sip of water then passing out again.  I got a lot of reading done, watched some TV shows that I hadn't seen in a long time, and was terribly bored.  Not to mention feeling guilty for leaving hubby at home with a 12 year old, 8 year old, and 1 year old.  The next morning Ricky woke up in good spirits, wanting to go home right away.  We had to wait until the surgeon came and took the bandages off, and check out his handiwork, then we went home.  We were scheduled to come back in a week to have the white cap removed, and to keep it dry.

The cap snapped off in a second.  Underneath was a long strip of gauze covered in iodine, which they unwound, and I finally got to see what the abutment looked like.  It was a little swollen and bruised, but very neat.  I had a bionic kid!  Didn't we all wish we could be bionic when we were growing up?  We let it heal for about 6 weeks then went back to get his BAHA.  Now, Ricky's reaction is uncommon from what I understand, and concerned me, but I want to share it to prepare parents in case their kids aren't "common" either.  The hearing aid is uncomfortable to put on.  It doesn't hurt, exactly, but there is a feeling of pressure there.  Now I don't know if it was this, or the construction next door (hammering unfortunately) but Ricky began to cry, and cry hard!  He wanted the hearing aid off NOW, and it took a while to calm him down.  I think it was sensory overload, the sound difference is phenomenal.  He did calm down, eventually took the hearing aid in stride, and his hearing test came back the best he's ever had!  He even heard stuff I didn't hear, and my hearing is pretty good!  I was so happy I actually cried.

Since the surgery, Ricky's post has had some scabbing.  We went back, got some antibiotics, and had a check up a week later.  The site is nice and flat, the way it should be, so I was told to keep in clean, but stop scrubbing the scabs off.  The scab is getting smaller, hopefully it'll fall off soon all by itself and be healed underneath.  As Ricky is only 9, his story will be an ongoing saga.....

Update:

Ricky is now 12 1/2.  His abutment is finally healed after ignoring it for months.  Guess my cleaning regime was too harsh and didn't let the tissues underneath the scabs heal enough.

His BAHA is currently away for repairs after it was introduced to the shower (come on Entific, make it waterproof!)

He has a loaner, thank you Union Hearing Clinic.  We still have his old bone conduction aid, but the BAHA is so much better (think back to old dial up internet compared to high speed!)

Ricky is really starting to talk now, he's the kid of a million questions.  Unfortunately, he needs to learn how to listen to the answers and absorb them so he doesn't ask the same stuff over and over again!

Ricky wants to be a mechanic when he grows up so he is really motivated to communicate now.  It was like a light bulb going on when I explained to him that he needs to learn how to speak clearly if he wants to fix cars.   His lack of hearing has been a huge hurdle to overcome and his PDD  hasn't made life easy.  But we're getting there!