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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 |
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Roll your mouse over the hospital pictures for "look at me now!" pictures!
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