Pre-Cath Day

Today was a busy day, we left London at 4 in the morning incase traffic was bad...we were hoping that Anniek would fall back asleep in the car on the way to Toronto, unfortunatly that did not happen. Apperently we missed ALL the traffic and got there in 2 hours...an hour and a half BEFORE the clinic opened. We hung out at Timmies for about an hour and Anniek had her formula and watched the little train that goes along the ceiling.
When it was close to 7:30 we went up to check into clinic and get the blood work and x-ray forms. We went down for blood work then stopped back up at clinic as a form was not filled out with what test was needed, then back down to blood work for another poke...Anniek was not happy about that but LOVED the Tinkerbell puzzle she got. Then we went over to x-ray, finished that quickly then up for an ECG and to the Echo appointment, then back over to clinic. We got everything done pretty quickly as well as one of the studies signed for by noon! Then we started with the other study and took a lunch break then finished the study ahead of the scheduled time. I let Anniek play in the Canadian Tire Play Park that she was asking to play in for about an hour then we headed over to the hotel.
As a BIG suprise for Anniek my sister came to Toronto and met up with us at the hotel we went swimming then out for dinner.
It was a pretty good day and as of now everything is still a go for tomorrow!!!

Off To Toronto

Tomorrow bright and early, also known as FOUR in the morning we, we are heading to Toronto for the pre-cath appointment for Anniek. She knows about the appointment and is okay talking about it, she just doesn't realize yet that she will need some blood work done. We are also going to get both of the studies done while we are down there. We will get the time for the Cath tomorrow at the pre-cath appointment and we are crossing our fingers that the day for the Cath does not get bumped. I will keep this updated while in Toronto the best that I can.

Another Study

I got home from school today and there was a letter from Sick Kids asking if Anniek could be a participant in a study. This study is to identify genes that cause heart defects in children and adults. Anniek's health will be followed by the project team and they are going to get a saliva sample. This will be good information for the future for children with heart defects. The results of the study when published could also prove interesting. We will get this done also when we are in Toronto at the end of the month for Anniek's pre-cath and cath.

TOF Study

I got a letter in the mail asking if Anniek could be in a research study to see if the timing of the surgicail repair of TOF affects how children learn and process information when they are older. I think it will be an interesting study. They are comparing 2 groups...Children that underwent the surgical repair when they were less then 28 days old (which is the group that Anniek fits into) and children that underwent the surgical repair when they were between 4 and 6 months old. I got the letter about the study about 3 weeks before I got the phone call to see if Anniek could participate...I was waiting for them to call to find out so that I could set the time of the study for when I had my reading week...but seeing as it is reading week now I am setting it for when we were in Toronto anyway for her cath. I am also happy that I will be getting a report about Anniek's performance in the study!!! The results of the study will be interesting when they have them too.

Got A Date For Toronto!!!

I was hoping that the date for Anniek's Cath would be sometime during the week of February 21, 2011 as I have that week off for school...its spring break that week!!! I got a letter from Sick Kids today with the date and it is not until APRIL. I am so disappointed that it is not until but there is not really anything that I can do about it. It just is going to be hard because it is the same week as my exams...I will talk to the person incharge of my program at the school when I get back to work something out for any exams that are scheduled for when Anniek is supposed to have her procedure. The nice part about it not being until April is that I do not have to worry about going to/from Toronto during a snow storm like I had to do in Fabruary of 2008...twice.

We Will Be Going To Toronto Again...Sometime

I forgot to update this when I got the results of Anniek's lung scan back at the end of September. I was just so upset with the results I didn't think that I should vent about the results on here...then it slipped my mind about blogging them as I have been very busy with school. For those that didn't know I went back to College. Anyway, I was not suprised that the results of the lung scan showed that the blood flow to Anniek's one lung is less then 30% but I was supirised that the blood flow is only 14%. I was a little upset about this...upset that I didn't listen to my gut. Last DECEMBER I asked the new cardiologist to do the lung scan and she said that she wanted to wait and that it would be fine. I should have follewed my gut and pushed for it to be done in the new year...in January of 2010. Instead I decided maybe I should put trust in the new cardiologist as I know she is not like the old one and there will be some change when there is a new cardiologist. The old one would listen to me and do what I felt comfortable with but all cardiologists are not like that. So I put my trust in her...apperently it was the wrong thing to do. When I talked to the cardiologist she said that she would bring Anniek up for discussion to have her sent to Toronto...which I knew as soon as I heard what the percent was.
Well apperently when the new cardiologist said she was going to bring Anniek up for discussion with Toronto...it ment in TWO MONTHS!!! I got the call today saying that they had just brought Anniek up for discussion this week and that she was placed on a 3-6 month priority. We would be almost at the 3 months if she had brought Anniek up for discussion two months ago when she said she was. I was not pleased at all when I got the message on my phone. It leaves me wondering how much I can trust this new cardiologist.

Lung Scan is...DONE

and now we have to wait for the results. Anniek flipped out as soon as we got in the room for the Lung Scan because she knew what was coming as we talked about what was going to happen and she knew that they needed to give her a needle with dye in it. Well it took 6 people to hold her down for the needle to get the needle into her. After that I got her calmed down and laying down on the table then they moved the "camera" close to her (it has to be about an inch away from her for the scan) when the camera got close to her she rolled over towards me. I talked to her and told her that she needed to stay still so that the pictures of her lungs could be taken. She laid back down but when they moved the "camera" close to Anniek again she moved and started crying. So one of the staff went out and got a special back board that had a 3 strips of material attached to it so that they could wrap her onto it so that she couldn't move every time they brought the "camera" close to her. Anniek stopped crying as soon as we left that part of the hospital. I am glad that this test is done with. Now its just the wait for the results.