MY SURGERIES

Let me start by saying that I think surgeries are very icky but I know I need them to help me be stronger and do more stuff! I try anything now that I'm older to get out of it, including trying to sneak out of the O.R. to go pee before surgeries, even when I really don't have to...it never seems to work, though.

*All of my surgeries have been at the IWK Hospital in Halifax, Nova Scotia up until March, 2004. All surgeries from March 2004 forward were at the Hospital for Sick Children in Toronto, Ontario.

*** Open heart surgery, this was done on February 5th/98 at the age of 9 days. I had an ASD {atrial septal defect - hole}, a VSD {ventricle septal defect - hole}, coarctation of the aorta {it was too narrow!}, and PDA {patent ductus arteriosis - something that was supposed to close, but didn't}. They closed up the holes and stretched my aorta and patched me all up with a piece of someone else's heart and some gortex patches.

***My choanal atresia was fixed on March 20th/98. I had bilateral bony choanal atresia, which was repaired transpalatally. This means they peeled back my skin on top of my palate, went up with a drill and drilled out the bone to open up my choanae. I had stents in for six weeks.

***On May 1st, after six weeks of stents, I had them removed in my quickest surgery so far. I was only gone for 25 minutes!

***On July 29/98, I had a gastrostomy tube put in - this is so my family can feed me directly to my stomach. Also, because I had severe gastroesophageal reflux, {all my milk was coming back up and out my nose, and some of it into my lungs} the doctors did a modified Nissen fundoplication. {they wrapped a part of my stomach up over my esophagus and stapled it shut so I wouldn't throw up into my lungs anymore} I had a hard time with extubation this time, I "crashed" twice when they tried to pull that old breathing tube out. Mommy was in the ICU the 2nd time it happened and between her and my most favorite ICU doctor, I was okay. But, it was very scary!

***On January 6th/99, I had to have another choanal atresia surgery done. The choanae {passages at the back of the nose} had started to close back over on one side and the other side was pretty much completely blocked. The ENT also put myringotomy tubes in my ears. At the same time, I had a "button" put in my stomach. This replaces the long g tube that I originally had. It's much nicer, because mom can take the little extension tubing out of the button right after my feeding, and I can roll around and play much easier without that big long tube hanging off of me. I also got a hearing test done while I was out, and the ophthamologist came in to have a good look at my eyes. My mom & dad try and make sure that everything that needs to be done on me while I'm "out" is done at the same time because it's dangerous for me to be under anesthetic un-necessarily.

***On April 22nd/99, I had a pre-scheduled surgery for my choanal atresia again. I got a new button as well because the one I have was leaking some. I also had a hearing aid mold done at the time as well. I have done really well, and have been gaining weight steadily with the g tube/fundo combination. Lately, though, I have begun to throw up a mouthful of milk here and there, so we are going to have to get a barium test done to check if the fundo is still intact. According to the barium swallow test, I protected my airway, but had it coming out my nose which could be a risk if I breathe the food back in. The barium test and reflux scan showed no reflux. After going home, I have still thrown up mouthfuls of milk, so mom & dad aren't totally too trusting in those tests!!!

***On November 18th/99, I had my myringotomy tubes replaced, as I had lost one a month or so before that. All went well, surgery & anesthetic seems to be a little easier everytime, although we still have to be very careful. I was also supposed to get my nose opened again, but the laser they use to zap my nose open is broken, and they won't have a new one until sometime in the new year.
*** Update on the laser is that it's supposed to be here in February and I have a tentative surgery date for the 22nd. But, it's been set and delayed several times due to government/hospital red tape with regards to the purchase of the new laser. Let's hope it's for real this time, my nose has been narrowed since September of last year!
***Update - the hospital called back again to tell me it would be another month or more before they got the laser this time as they just realized they have to get a different laser that costs $80,000 more so other parts of the hospital can use it. So, the paper work starts all over.
     Mom & dad have had it as I have been up through the night off and on since September choking on my "junk" and lately it has been every night for over a month. So, mom called back and told them to see how long it will take to get me in up in Montreal or Toronto to have it done. This is CRAZY, I've been waiting since September, it's hard to manage all the gunk up in my nose and the back of my throat, and my breathing overnight is really hard because I want to breathe out of my nose and I can't get enough air that way (my openings are very tiny) so I struggle a lot overnight.

     Also new on the choanal atresia front is "mitomycin". This is something that my mom found out about on the CHARGE listserv and is looking into for me. It is a chemotherapy drug originally but is being used in some parts of the US on the inside of the nose (in a gel-form) after a dilatation of the openings. It has been having some great results with the CHARGE kids that this doctor in California has been using it on. (My mom called him to get all the details she could) Anyway, it's in my ENT's hands now, (the information & the doctor in California's name & number) so we will have to see how things go. After this long wait for the laser, we are ready to try anything to keep my nose patent!

***UPDATE
We went down to Halifax for surgery on Feb 28/00 (they decided to do it manually - cut it out) as the laser is going to be another month getting here. We tried to go to Toronto or Montreal but they don't do it with the laser either. Halifax is the only place in Canada, so we decided if we were going to do it "manually", they could do it right in Halifax.
Well, we got there and my surgery got cancelled - I had a chest infection and so it wasn't safe to put me out. Mom and dad were disappointed, but some good did come out of our visit. We got a new date (April 6th) and we will have it done with the laser this time (which is nicer for me) and the ENT is going to try the mitomycin! YAY! Hopefully it will work, we are going to have it up one side and not the other, that way we will know if it worked. Also, we found out we could request which anesthetist we wanted (which we didn't know before). So, we made sure we put down our favourite one for all upcoming surgeries. He knows me the best, is very parent-oriented and calm. Nice qualities for someone who is putting me to sleep!

***March 30/00
Choanal atresia surgery #4 at long last! The doctor opened me all up with a brand new laser, he said there was a lot of opening to do on the right side and some on the left. He put the mitomycin up my right nostril, so we will have to wait and see how things progress as far as that goes. I took a little longer to recover post-op with bloody discharge coming from my nose for almost 2 weeks and almost exclusively out of my right nostril. Mom wonders if the mitomycin might be the cause of that because if it stops scar tissue from forming, it might delay the healing process.

***August 14/00
I had new myringotomy tubes put in and the ENT also looked up my nose and said the right side (the mitomycin side) was starting to narrow. He says that doesn't mean the mitomycin was a failure, because of my anatomy on that side (it is smaller to begin with, my septum is pushed over to that side). The good news is that my left side is WIDE open! Yay! I also got a new kind of button, it is called a "Kangaroo EntriStar". My mom is going to take a picture of it one of these days so everyone can see what it looks like. My old BARD button was always leaking and the tube was always popping out and making a big mess. They also did an ECHO on my heart while I was "out". They tried to do my ECHO in June when I was awake but I was having nothing to do with that, after screaming until I was blue, the cardiologist decided to do it the next time I was going to be out under anesthesia.

***April 23/01
I had my fourth set of myringotomy tubes put in (butterfly ones this time, they are supposed to last longer than the other kind. I also had my fifth choanal atresia surgery with the laser, my right side was almost all closed up, but the left side was open mostly all the way. I also had a new g-button put in at the same time and an ECHO on my heart again (they didn't get a good look last year). Everything looks great & in tact with my heart, so we are all pretty happy about that!

***May 9/02
Surgery #11 - almost the same as last year....my usual yearly oil, lube & filter change :) Had my nose opened again with the laser (#6 for my ol' nose), my ear tubes checked (no new ones put in as one is still in and the other is out but there is still a large hole there), ECHO for my heart (looks good!), new ear molds taken, a new button in my stomach, and a few dental x-rays. They were going to do a dental cleaning, but it wasn't necessary as my teeth were VERY clean. I guess that says something about my addiction to teeth-brushing!!!

***June 28/02
Surgery #12 - Repeat g-button surgery, I got a faulty button in May, it leaked all over the place ALL the time! Hope this one is better!

***January 9/03
Surgery #13 - This time they decided to take a piece of my septum (the bone running up the middle of my nose) so that if the scar tissue comes back, the middle will be open and it won't be as much of a problem. I also got a new button as usual and a new ear tube. I only got one new ear tube because I have a big hole in my left eardrum that acts as a tube. I hope this nose surgery works, I'm getting tired of it, and I think mom & dad are, too!!

***March, 2004
Surgery #14 & 15 - We went to the Hospital for Sick Children in Toronto to have this procedure/surgery done. I had a cardiac catheterization and open heart surgery to fix a valve in my heart on March 29th, 2004. Mom, Dad & I were up there for a month. I bounced right back like a rubber ball and went right back to school & dance class four days after being discharged from the hospital.

***October, 2004
Surgery #16 - Just a quick "new button" surgery and removal of an old ear tube at the IWK...quick & painless, we drove five hours home the same day and I went to Sparks and received my badge the SAME night!!!

***June, 2005
Surgery #17 - Stage one BAHA implant surgery at the Hospital for Sick Children in Toronto. This was very uneventful; Dr. Papsin placed two titanium screws into my mastoid bone and sealed me up again. We left the hospital the same day! We are due to return in early 2006 for stage two.

***February, 2006
Surgery #18 - Stage two BAHA implant surgery at the Hospital for Sick Children in Toronto. The abutment was placed and I did absolutely wonderful. We were back in March to get the BAHA Divino fitted and other than one service call, things have been going well with it.

***November 19, 2007
Surgery #19 - By far, the happiest of all surgeries: G-tube closure! Eating orally since mid-August this year. After 9 1/2 years of tube feeding, this is so exciting. Someone, hand me a cookie!!!

***May 5, 2009

Surgery #20 - After a schoolyard accident resulting in the titanium screw that holds my BAHA implant on being kicked and partially dislodged from my skull, I had to have a new implant screw/abutment placed and a skin graft to cover the hole left where the other one fell out.

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