Friday, April 10, 2009
Well just to update everyone, Things are pretty quiet around here. Hunter is talking lots and getting into trouble just like his big brother. Hunter has really been working hard on using his "words". Which by the way he has so many I can't even list them. He is using 4 word sentences now!!! pretty good for a kid they said was deaf ( last August ).
here are some of his most used phrases.....
"mom, I want chicken "-- ( Mind you that means a trip to Wendy's.. that is the
only chicken nuggets he will eat.)
"Tristian get out of the barn!!" --( that mean tristian is hiding in the toy house..)
"OH NO!!! baby crying" -- ( baby on tv)
"Dora's mommy is having a baby" -- can you tell this kid likes Dora...lol
"Pee,Pee potty mommy" --you gotta love that one!! even though it isn't all the time.
you get the idea, he is doing great.
Last week Hunter had and ENT appointment and all looks good, although one of his tubes seems to be growing out of the ear drum faster than normal, but it isn't hurting him... so we just have to wait and see.
This coming week Tristian has an ENT app. to see about his tubes ( his are growing out too ). And then Hunter has a pre-cath, pre-admit day ( whatever you want to call it ) it is on Friday. So that means getting up before the crack of dawn, and travelling to Toronto trying to beat the traffic. Should be fun. He is getting a chest X-ray, blood work ( yeah!!) and then an echo. The echo was a sedated one ( but thanks to a lot of phone calls , they are trying to do it with out). I don't understand doing a sedated echo a couple of days before he has a cath scheduled!! duh!!! isn't the point of the cath " to look at his heart??"... I don't think it is smart or safe having it done so close together, considering that he just had one ( in order to get the cath!! makes no sense-- he had it at the end of January )..
anyway...... We will be attempting to getting Hunter to lay still for one... So this means a DVD player and new movie!!! maybe the easter bunny will bring a new movie for him... YUP!!! I think so, I will have to send a memo to the Easter Bunny!!!....lol
After that day is over, which I am really hoping that it goes quick!! I don't want to send the day there and pick up any germs. Hunter then has his cath lab on Monday, April 20. We won't find out if he is the first or second case until friday, and I don't know how long it will be scheduled for!! But my guess 3 hours ( ish ).. I am thinking that there may be a few veins to coil off... But I am not a doctor, But I have discovered in the past.. My instinct in way better....
After the cath, and after they look at the results.. hopefully everything will be ok and he will be booked for the fontan. ( my stomach is turning just thinking about it ). But as many heart moms have told me " it is a new beginning", so we can get on with our lives . You won't have the surgery hanging over our heads. He will be post-fontan ( I like the sound of that).
Although the first year after is not the greatest because of the warfarin he will be on.. ( in the states they use ASA) but here in Canada, until the fenestration is closed they are on warfarin, then ASA... but that all depends on your doctor too... some docs keep them on warfarin... not what I want, but I will deal with all that later......
**** when someone is on warfarin it means constant blood work to check levels, and trying to get it to a theraputic level, a cold can throw it off, and that would mean lots of blood work..... We are also in the process of getting an INR machine at home to cut out blood draws, so we can do finger pokes at home.. But they cost $$$$ big bucks...oh well, it is better that blood draws every other day... yuck !!!
"when will the fontan be ??" I don't know.. bu thanks for asking...lol My guess is sometime in late summer early fall ( i just want it done before RSV season ).. ( that that I want it all-- but he has to have it.)
I also would like to ask everyone to keep Gavin in their thoughts and prayers. ( link below.. in heart friends ) . He went for his cath about a week ago, all went well!! and Faith and Adam ( his mom and dad ) were just waiting for a date for the fontan... and to their surprise they got a date .. IN TWO WEEKS... April 22. WOW..... that was really quick. I hope that all goes well.. and he is home soon....
Also, another heart babe Grant ( link below ) he is very ill. He just had surgery yesterday and needs good vibes, prayers, positive thoughts, whatever you can send..
Have a great Easter!!!
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Just want to say ...all the best to all of you for the next week or so...you will be in our prayers to our Heavenly Father
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