October update.

So, as October started, the kittens are growing and Hunter is loving them more and more.

Hunter with his very own baby pumpkin.

Tristian with his pumpkin

Hunter was just so excited, that I let him help me carve another pumpkin. He loved it so much.

This is Tristian being Scooby Doo, with the full acting like a dog look.

Here is Mackenzie , not liking that she had to wear her winter coat under her costume. But she got over it when she got her candy.

Hunter was Mickey Mouse, and my girl friend brought her little Princesses over. Aren't they a cute bunch.

Mickey had enough of the mittens that came with the costume...lol

I hope that everyone Had a great Halloween.

Well everyone seems to be over that bug. ( which had all the symtoms of H1N1 - but since they are not testing we don't know. ) they had a high fevers, lethargy,cough, chest colds ( kenz ), runny nose, chills, aches, earinfections. ( no runs or vomitting though. ) So I am hoping that is was that and know we have some immunity building up. I don't want anymore of anything for a long long time.

Hunter is doing well, except for his ear infection that seems to still be draining. He has a little cough still but nothing that is bothering him. ( I have kept him home know for a couple of weeks.) Kenzie and Tristian were off a week, and went back this past monday. They are both fine except for a slight runny nose.

Myself, I had a terrible chest cold. But that has passed and know I had fluid in my ear. I mean I can't hear anything in it. They said because there is no infection I just have to wait for it to clear up on its own. Which is fine because it doesn't hurt anymore... BUT I AM DEAF... which may not be such a bad thing some days.

I wish all the other heart moms and their familes well during this season of H1N1. Whether you vaccinate or not, I hope that everyone stays strong.

Talk soon.

Sick Household

Well as usual...lol I posted that the kids are fine, and they all get sick. sigh..........

On Friday Tristian had a really high fever. ( 104.8F) so after a trip to the ER.... and the diagnosis of a double ear infection and antibiotics, Tristian is feeling better.
Kenzie has picked up a bug and Hunter too ( but just a fever and a cough ).

I have picked up the head cold going around, so it has been fun. Three kids home sick all week...lol Oh well.... Tis the Season.. right???

Other than that there is nothing really new to report.

** In the heart Buddies section ** If you have been keping up to date on the kiddos and their families. Gavin's Mama is having another baby tomorrow.. PLease keep her and Baby Brody in your thoughts and prayers...
Good Luck Faith!!!

Catch UP!!........lol

Wow, What a really busy month this has been. Where do I start ???

Well the kids went back to school, everything went well with that....lol
The kittens are growing, and are very fun to have around. Although I think Hunter loves to love them a little too much. He has gotten into trouble a few times by picking them up by the neck.. You think the kittens would run away by now...NOT!

Ok, Sooooo...
When I last posted Hunter was going for an Echo. Well he had one in London , and it was great. His function was great, although there was some narrowing of the PA. But nothing more that he had before. So not really an area of concern. So we don't need to go back to London until Jan.2010.

He had an appoinment in Toronto ( where he had his surgery ). They are really impressed with him. His O2's are running 88 and 89, and sometimes in his sleep he will reach 91. So we don't need to go back until June 2010. Which we will start to look at if his fenestration has closed or if he will need a cath. SO that is great too...

But not everything is good with Hunter... Poor babe.. He had a dental visit before his fontan and he looked ok. But after his surgery I noticed that his front teeth looked different. And sure enough he has cavities and a chip in the front tooth. ( which could have happened when they re-intubated him for the fontan.. sigh.....)

So after another dental visit , this time to a child specialist.. ( and he was so nice. )
Unfortunatley It was really worse than we thought. He doesn't think that filling the cavities and a couple of root canals are really realistic for Hunter ( being a heart babe ). Not worth all the work, and considering the risk of infection is higher with what he needs done..

So what are our options??? It looks like they want to pull all four front teeth.... sigh.....
BUT!!! he doesn't want to do it without putting him out for it.. Sooooooooo, we are getting referred to Toronto. So hopefully, we will find out more soon.

Other than that, Hunter is great. Still not sleeping great .. BUT that is Hunter...lol

I think that is it for now. I will update in a while with more pics and more dental details.
But for now, please just keep him in your thoughts and prayers..

thanks
Drea

Please Keep This Boy In Your Hearts.

I will update the blog about the family later, It has been very busy around here. But everyone is fine and behaving...

But for today I have come to ask all the readers and friends and family. To keep Sammy in your thoughts and prayers. He is having an unexpected open heart surgery today. His link is in the Heart Buddies section. His mom Erika was the first " other " heart mom that helped me through all these years, all the surgeries.

She is asking for prayers, good vibes, positive energy and lots of love to be sent to her little Rock star Sammy...

Thanks

So They Are Here.

So the kids finally got their new pets....
I know we had posted the names before , but they have chaged.
This is the little boy. His name is Chance. We named him that after much imput from many friends. As you may notice from the pictures that Chance has a perfect little black heart on his side. I never noticed it before, until we got him home and he was sitting with Hunter
Soooo. Chance-- taken from " what is the chance of getting a cat with a heart on his side , considering we are a heart family...."

The little girl who is snuggled up next to Chance , her name is Magic.

She got out of her pen 3 times, LIKE MAGIC....lol

They are really cute and friendly. The kids are learning ( ongoing ) that they have to move slowly and not scream or they will scare them. They are playing and sleeping really well...

On another note, I am trying once again to potty train Hunter.. But the last two weeks he had an aweful case of the runs.. ( more than likely a rotovirus.)

So I hope that will take off this time. I am sick of diapers....

Health wise Hunter has had croup once, and an aweful rotovirus or bug... But he is still doing well..

He is playing his letters ( alphabet ) that is his favourite toy right now, that and Thomas.

The other kids are finally enjoying some warm weather, we went to the water park a few times.

Next week Hunter goes in for an echo , His first since the fontan.

I will keep you all posted.

Update... End of July..

So it has been a few days since my last post.

Hunter is doing well, he has all of his stitches out and " No sticky tape" as he would say.
We had our first visit in London the other day, and so far so good. He will have an echo in a month, But they are very please. Which in turn makes momma pleased.

Hunter's night terrors have stopped, but the pain has hung around. He is fine all day, but as soon as night comes after a few hours he is screaming in pain. Sooo...... He is not on codeine at night, which has made him really constipated... FUN!!!

on a lighter note.... He is able to return to daycare soon... ( for socialization ). I think he will be very happy to go once or twice a week and see his friends.

He is still infatuated ( sp?) with the alphabet and the vowels... he sings his song all day everyday...lol I am trying to get it on camera-- but he stops when i get it out...sigh... and his trains too.. and cars... typical boy stuff..

As for this summer, rain rain GO AWAY!!!! now that Hunter is done with the fontan, I want to take him on a few days trips to the zoo and other places, but it needs to stop raining. !!!!

And surprise!!!! we are getting two new family members...lol NOT what you think!!!
.....SO NOT WHAT YOU THINK......LOL.....
we are getting pets.. for the first time ever, I have decided that this craziness is hopefully over with Hunter for a long time, and Mackenzie and Tristian wanted a pet. I have also researched and been told that many disabled children respond well to animals and I think the responsibility might help her with some of her control issues ( I am hoping ). So we are getting two baby kittens at the end of Aug. ( as they are only 2 weeks old right now ). They are a brother and sister... ( many people have told me that two kittens get into less trouble, because they have a sibling to play with less problems with behaviour issues...lol
So I think that we have decided on names The girl is Kovu ( grey and black stripped ) and the boy Jersy ( black and white ) ( like a jersy cow )...lol
I really hope that my allergies don't act up, But i guess that I will get used to them.. Hunter is really impartial ( he says " no kitty"..) so I don't know if he will like them or not, I will see....

**updated **
I have been informed that those are not the offical names... they have come up with a few more...
If anyone has any cute names or good names for kittens leave me a message, and i will relay you message to the kiddos...lol

So I hope that everyone is enjoying their Summer.... ( and hope that all this rain leaves soon )

Talk soon...

Recovering.....

Well Hunter seems to be doing really well the last few days. He is going all day with no tylenol. He is running around playing with his brother, and starting to eat much better too....

Hunter has his first visit in London ( cardio ) since well before his fontan(appoinment is for next monday ). They are just checking him out, and more than likely taking out his last stitch... His o2s the last few days anyways have been good.. ( he wouldn't let me check them before..) They are hovering in the general area of 88-91, i even got a 93 while he was sleeping but only for a few seconds..lol

Now that I have said that... His nights are not going as well.. He is having really aweful night terrors. He wakes up screaming and then cries so much that he is then screaming in pain and holding his chest.. He is starting to roll around in bed too... which is another reason he is waking too... so at night he gets the full dose of tylenol every 4 hours. I remember after the Glenn procedure Hunter had night terrors that lasted a few months.. But Hunter has never really slept that good anyway.. so ontop of that the poor boy is screaming for hours during the night...

Last night he wanted to watch Cars the movie ( at like 2:40 am ) but after him screaming for almost 30 minutes I let him, and not even 5 minutes later he was out.

Now that we are home, he is getting back into his normal tv shows and enjoying them again... But he a new love for the movie cars, I mean like hundreds of times he has watched it... he is starting to say the words as they do , and he loves singing the songs during the movie...lol
I should catch that on video....

But I am going to sleep, hopefully for more than an hour.... ( before the night terrors start )
hope evenone else gets a good night sleep....

Drea

All the tubes are out!!

So yesterday was another clinic day. We had to be there early..

So after waiting for ever for the fellow and nurses, Hunte finally had his last drainage tube taken out. He was a little upset afterward. But he was saying " tubie gone ".
He is feeling better since they took the tube out, and is moving a bit better too.

Last night was a bit better, But he is still having night terrors. I suspect that he will have them for a while. But last night he tried to roll on his tummy... This was a cause of many tears for a while. Hopefully he will learn not to roll on his tummy until it is healed.

So know we wait until London calls us for a follow up visit, prob some time next time..

Thanks to everyone who has been following the blog... And thanks for all the messages and well wishes and prayers....
Much appreciated...

Another clinic visit... Post fontan ( day 13 )

Well we had another clinic visit today. So we left around 5:30 am and got there around 8 am. And after an x-ray and meeting with the fellow, If Hunter's drainage stays low he can have the tube of Thursday.. YIPPIE!!!!!

Both Hunter and I will be very excited about that..... So He goes back to clinic on Thursday...

Hunter is still not eating great, but he is acting more " Hunter" or more normal.. although night is still full of night terrors and screaming... He is just on tylenol now , so he is feeling not so stoned...lol...

On a lighter note .. Tristian got his new bed yesterday... A BUNKBED!!! pictures later... But man this bed is nice, and in his new room ( which is not painted yet, but that can wait. )
He played on the bed last night for ages..

I must so a big thankyou to Tanya who once again took Tristian last night ( overnight ), so we could take Hunter to clinic so early!! Truly my best friend.

Sorry for the Delay.

We had clinic yesterday... and the traffic was just out of this world...

Anyway, so far Hunter looks good, although his pain is still not under control.. We are trying to find the right dose of morphine without knocking him out... I am finding today he isn't doing much walking, but Tristian is home tonight so maybe that will motivate him to get going...

Hunter had a few visitors today.. Oma, Grandma and Jackie... none of which he wanted anything to do with... it was NO,NO,NO,NO,NO... He is really out of sorts..
Thanks to Jackie for the gift, Hunter will love it as soon as he gets a bit back to normal.

So as for Hunter, his next clinic day is Monday. We meet with the surgeon or fellow ( whatever one is around ) to look at his incision.. and JP drain.

The JP drain is slowing down a bit, but really is no were around the volume they want to pull it, so it looks like he will have it for awhile.

I find Hunter is really scratching at his incision, he made it bleed last night ( and I have it covered with gauze and tape ) he really goes nuts with it at night.. ( I know a incision gets itchy when it is healing. I hope that this will end soon. It looks a bit better from the other day... But it takes a while to heal.

I noticed Hunter had a bit of a fever again tonight ( low grade ) he must be fighting a virus still, maybe that is why he is not really doing much today either....

Thanks to everyone for following Hunter through his surgery and the start of his recovery....
Please keep him in your thought and prayers.

Back to Clinic...

Tomorrow is clininc check up day... A good thing too.. Hunter has a fever as of 5:20 pm tonight...
I made a call to his Uncle Ben ( DR. ) and we both agree it doesn't sound too urgent, but good thing we are in Clinic tomorrow. ( thanks Ben )

Hunter needs to walk around... I think that is a big part.. he isn't moving enough ( said Uncle Ben ) So hopefully we are not admitted tomorrow.

But just to make sure I have started packing a bag.. one for me and one for Hunter... if we don't need it great...

I also know that Hunter is still in too much pain... Tylenol is not really touching it, so I gave him a dose of his morphine.

So far this post Fontan life isn't much different than life post glenn... ( pain wise )

So please keep Hunter in your thoughts and prayers that nothing is developing ans he is home tomorrow.. ( I personally don't think I can handle much more... I know Hunter can't )

thanks.....

We Are HOME!!!

We are actually home.... ( last night around 7:30 we got home )
How nice it was to be in my own home.

I am by no means orgainized yet, that will take a few days. I have to call into the hospital everyday for Hunter's drainage tubes. BUT at least he his home, and hopefully will start walking again...

Hunter goes back on Thursday for clinic and monday for clinic.. ( because he still has his tubes )
We are keeping Hunter on the fat free diet ( although the numbers that came back didn't really show any fats, but the think it is a good idea. ) His scar is leaking at the bottom, and is red is places, so they want to keep a close eye on it... PLEASE, PLEASE just heal!!!!

So , Hunter decided last night the Tristians room, was now his!!! I have been talking for a while about moving Tristian to his new room and Hunter would get Tristian rooms.. BUt I had not done it yet.... Well Hunter did it, he would not even go to his old bed.... OH . my funny boys..
Tristian is away this week at Tanya's, so I guess when he gets home he will have a surprise too... ( now I have to get him a bed. )...lol

talk more later... thanks for all the e-mails and FB messages and prayers and well wishes... Please keep them up for a while, until HUnter is a bit more recovered..

another day here...

Well we are still here... Hunter is still really unhappy, although he did walk across the room..
We are really tring to get out of here, but you know hospital lingo, everybody passing the buck. I think he would do much better at home.. actually I know he would be better.

Well he is now down to one tube... and he was not happy about having that tube out. He has watched many movies.. he is really liking A Bugs Life....... or as he says... Monster bugs...lol

And know he is on a fat free diet because of the drainage... I knew this this was going to happen, because he was draining so much... oh well... i will have to get a list of foods that he can/ can't have....

I thank all the moms and friends for your great ideas...

Thanks to Grandma for watching the kids this week. thankyou....

Hopefully Hunter will start to come around in the next day.. I really do miss those smiles and laughs. ( and hopefully he will he will eat too.)

July 4 still recovering.

So the last few days Hunter has had a very hard time ( or is giving us a very hard time.) Either way... I have not yet seen my happy little boy.

lAST NIGHT WAS VERY LONG WITH NIGHT TERRORS... he would wake screaming.. and would not really settle. I got him to drink about the equivalant of a sipper cup full of juice. This morning was really not better. He has two drainage tubes, but only one draining.. and actually it is draining alot.

On a good note, he is going poop great!!.....lol but he refuses to eat today.. not smarties, not cookies, not chicken, not anything.... Finally this afternoon I got him to drink about 200 ml of juice.. I am getting worried about this struggle.

Hunter went for a walk outside, and the only thing that maybe got his attention ( not even a smile ) was a woo woo!! ( fire engine) if only we get get then to go buy every 2 minutes we might get a smile. I am finding that Hunter is very very sad.. I wouldn't say depressed.. but really close.
He would not play in the toy room, he just wants movies...

If anyone has any ideas please let me know... ( nothing from his goodie bag is even making him blink... NOT one smile yet.

I so miss my little boys laugh and smile...

Since it is the weekend too, nobody is really here, and nothing is really going on.. So i have no idea what is planned..

But I have to say we are really lucky that he is going to the bathroom, and has no other real issues. He just needs to drink more and EAT!!

I have to say that I talked to Mackenzie this morning, she sounds fine.. and Tristian informed me that he scored 4 goals in soccer the other night!! GO TRISTIAN GO!!! He said that he is a great player now...lol.. But his main concern is when he is going to Tanya's to stay for the week. He is getting so excited about seeing Alina... I am so grateful that My best friend is taking Tristian for the next week. He will have a blast. ( although Tanya may not want to have him again... the nighthawk thing...lol her girls go to bed so good an dso early!!!)

Mackenzie is going to her respite worker next week. (Mackenzie loves going to Barbs... ) thanks Barb.....

that is it for now... Gerry is trying to get Hunter motivated to stand and try to walk... we shall see... Although Hunter did say he has a sore throat, that could be from being re-intubated so fast after surgery... maybe this is why he won't eat and doesn't want to drink lots...

I really hope that we get outta here soon.. we can afford the hotel for much longer... and I don't want to do the RMH-- Ronald Mcdonald House.... bin there don't want to go down that road again...... I have to go find a laundrymat too... clean clothes are needed soon.

please continue to keep Hunter in you thoughts and prayers, I really need my baby boy back...

This is Hunter the morning of the Fontan June 30.... just playing around.

Showing everyone how he does a kartwheel......lol

This is Hunter out of surgery breathing tube still in

His lovely drainage tubes..

some of the tubes and wires and stuff...

still June 30... resting after surgery

WOW... look at those numbers.... July 1 ( breathing tube out)

July 1 not a happy camper...

This is Hunter today July 3.. not to happy with anybody.. but some tubes are out....

Notice his new puppy... ( he is watching a movie )..

please continue to pray for Hunter, send good vibes... thanks

Posting comments...

I have had many , many people tell me that they could not leave messages....
I don't know why that is..????
I do know that you need a google account ( which they are free ).
once you have one you should be able to leave a message ( just sign in with you google password and account and you should be able to leave me a message.... HUGS~~

and thanks to everyone...

post op 2 and 3

Sorry for the delay, But yesterday was very busy...

So yesterday Hunter was a NO,NO,NO,NO, get off me mood. He didn't want anyone to touch him . But can you blame him????

So yesterday morning I got to the hospital and he was just waking up and wow... I got Hunter to eat 5 grapes and drink some juice... ( kinda weird though- the day before he was begging for juice and today I was forcing him to drink and didn't get much down.) He would not eat all day, but he did have two good BM...lol you moms know what a relief that can be for them...

I did however get to snuggle with him and hold him for a few hours yesterday. That felt so good. after that he got some pain meds and went back to sleep, just in time for shift change ( which we have to leave anyway )

I came back and all his dressing were changed and he looked cleaner, but still not happy. At least Diego keep him company. And thanks to the nurse who finally found a dvd player for him to watch... so that made his going to bed better...

At that time ( last night he had still not drank anything ) so dad stayed all night with him and finally got him to drink a whole 2 full sippy cups full... yeah !!!

So this morning was different... he was not really in much pain , but man he won't look at me... He is MAD!!! he is snuggling with his doggie and watching his movies.. He will not take food or drink from me at all!!.... so I am hoping that dad has the touch when he gets some sleep and comes up later today...

As for Hunter he is doing good. o2s are in the mid 80 sometimes low 90..
They have taken out 2 iv's and from my guess he will have 1 drainage tube out today.
I think this afternoon we will be moving upstairs to 4D... Yesterday we could have gone BUT there was no room... FULL HOUSE....

So he will be in a private room once up there, so maybe he will start to eat and drink a bit if he feels less threatened... I hope.

Thanks to every who has written and sent their prayers and well wishes...
I thank all my friends and heart mom friends for all your support, You really find out who your friends are when things like this happen. You find that friends are closer than family...

thanks again.

Happy Canada Day....

Huunter successully had his breathing tube removed this morning aroung 11am... he is a bit croupy, but much happier that the tube is out.
He finally was given a drink around 2pm and he loved it!!!! he wanted more, more , but we had to wait.
Finally lasix was started lated today so he can drink a bit more, although he is clearly positive.. no food tonight maybe something tomorrow...

They could't find him a dvd player today, so it was a good thing that we had ours.. propped up on two face masks boxes...lol taped so it won't fall over... But he has been happy watching Deigo and Harry and his Bucket full of Dinos.. mind you it is in and out sleeping..

He has been really good, in obvous pain, but who would be....
Maybe tomorrow he will be moved to the floor.
All his blood gases are good, venous mix is great. and he drainage tubes are draining lots... one is leaking air too... we will have to see what that means in the morning.

Thanks to all my friends that have been praying and thinking of Hunter. you are great.. He really is doing great, although he is not one for pain.

His o2s range anywhere from higher 80's to low 90's.
He continues to do well, hating every moment when someone touches him... which is no surprise..
Oh yeah he also got his catheter out this morning... this made him happy.... and mom too..

Please continue to pray for him, send all the good vibes and well wishes his way.... he is only 24 hours post op.. he has a long way to go..

But wow.... E... we are on the other side!!! still don't fully appreciate it,, but the fontan is done!!!

pictures to follow, maybe tomorrow.... gotta figure this thing out.....

Thanks for everything you guys.....
and keep it going....

Sorry for the delay....--- post op day 1

So long story short... Hunter did not go in until 2:30pm.... yeah that was a lot of fun to keep him happy without drink or food.

I thank everyone fro the e-mails and direct comments, hunter has many friends.

So about the surgery........ He went in late and I meet with the long list people... blah...
his surgery was set for about 4 hours.

I saw his surgeon shortly after 3 hours, he came out to talk to me.... He was walking with a little hop in his step and a smile... So I took that as all good...

Hunter did well going on bybass, they completed the fontan with fenestration and now they were watchign him for a while then going to be taking him of bypass...

So the surgery went well... NO surprises...

They tried to extubate him right away, but unfortunatley he was doing his croupy cough ( like I warned them that he would do.) so they but the breathing tube back in -- actually a smaller one.)

At least the doctor that we had last night-- whom I think he is great Dr. swartz... he listened and gave 2 full doese of dex and we will try to extubate this morning and have another 2 full doses of dex... hopefull this works.. currently he is on the lowest setting for breathing... so at least that is good....

They had a really hard time bring up his blood pressure last night.. he had many tranfusions and lots of albumin ( blood product -- but no blood ) vassopressin, milrinone, morphine etc.. you know the normal heart cocktails of drugs.

I sat with him a lot last night ( Gerry was not with me) and Hunter looked good and puffy!!
his o2 sats were up to 97 during hte night, but have settled today arounf 89.. we shall see..

No pictures today.... but i have a few and they are really not that bad. he looked good...
But I was a little disappointed, i was really looking for those roses cheeks and pink lips, didn't see them last night.... maybe today.

I was up at t he hospital early early this morning to see my baby, he looked a bit better..
His BP was finally up to a good level, all his blood gases were comign back good... now we just need to get the tube out...

So that is were i am heading now.. so thanks for all the well wishes and prayers and good vibes and eveything else that was being sent to us... Please continue to keep Hunter in you thoughts and prayers
thanks

So the day is really here...

We got to Toronto last night and got settled into our room.. Grabbed something to eat, and drink. and then we started to play games with Hunter to keep him busy..
He didn't fall asleep unitl about 11:20 pm.. he was watching a movie-- so I put it in the playpen and then he fell asleep in about 10 minutes..
The sleep was ok.. but what can I expect my nerves are getting the better of me.

So at 6am Gerry went over to the hospital ( across the street ) to check in ( we did not wake Hunter... we already had a feeling that he was second case..) so he gets there and yes Hunter is second... But the want him there now.... mmmmmmmm...NO.. why not let him sleep unitl 9 or so then bring him in...
The nurses don't care... it is all procedure which is not implimented to be benificial to the kiddos...
So we took him over for 7 am... they listened to his heart and took the blood pressure... then said ok.... NOW WAIT!!!!! so my whole point was validated... He did not need to be there so early, they could have left him sleeping.... Now mama and dada are iritated..-- But what can you do.

So now at 7 am until around 1 approx 5 hours.. of keeping Hunter occupied and happy. ( remember he can't eat or drink..) FUN!!! just more stressed added to the day that already has my head spinning..

So it is about 10:20 now.. still trying to keep Hunter happy.... So far so good. Thank goodness for DVD players and movies and leapsters...

I will try to keep everyone updated today what happens but the computer lab closes at 4.. I don't know if I will know anything by then.... so please keep calm... hopefully no news is good news..

On a lighter note. My staples are out ( as of yesterday and BOY!!! they feel all better.) But I can't go in the pool because of one of the staples pulled and ripped the skin.... Not like I would have time.... BUT... oh well...

I have to let all you CHWO( london and area ) cardiac patients know .... ( I just found out ) they no longer have there program for rembursement... WHAT ????? I know know onw told me... I thought that the hotel would be covered and the parking.... BUt let me tell you!!! the program is NO LONGER.... so start saving for when you have to bring your kiddos down to Toronto for surgery... you no longer get ANY help... ( I would have like to knoe this a few weeks ago.. not the day of!!!! not great for nerves already shot!!--- But once again what can I do.... NOTHING..

I am doing ok right this minute... my snapping point is going to be wehn they take my baby..
I am crying just thinking about it.....

So the plan is around 1 pm he should be going in....
please everybody keep sending your prayeres and well wishes, good vibes Hunter needs then all right now.....

thanks
Drea

( update hopefully to follow soon..... )

starting to pack..

I have started a small pile of items for Hunter when he is in the hospital. Some treats or rewards for my baby... I got the idea from E.. I remember she had a special box for Sammy when he was in the hospital.. It seemed to work. ALthough I am trying to come up with some things to put in it.... I have some big stuff..... A few new movies... some new cars... ( Tracey got Hunter a new book and movie of Thomas and two new engines..) Hunter is going to love them...
If any one has any ideas I am open.. I am thinking it will have to be none messy.. because of the stitches...and the open heart heart surgery....
A special thanks to Andrea and her Family for the gift certifs.... they are much appreciated...


I have been gathering items around the house.. you know health card, camera, clothes,snacks.....
too much to do....

That is where I stand today... I am off to a wedding soon... and then it is down to getting things done....
bye for now...
D

A Week Away!!

First... Happy Fathers Day, to all those amazing dads.

Well in a week, Hunter goes in for his fontan. I am getting excited to have it done and not having it hanging over our heads. And on the other hand, I am getting anxious about what they have to do.

Hunter is almost at the 29 pound mark. ( just under )..... I am not certain that I will be in the best of moods this coming week. As I am thinking about what my poor son has to endure in the next few weeks. I have faith in the surgeon. I think he is an amazing man... I just fear the unknown.

Well yesterday I went and started to fill up Hunters bag for the hospital. This is a surprise bag.. He will get something to keep him entertained and calm....
so far there are 2 new movies ( Harry and his bucket full of dinasours!!) hunter loves him!!
a new stuffed animal...
( although not new....) I can't forget his leapster.... he loves playing the alphabet game!!! I mean for hours this keeps him entertained, although I don't know if this will work in a hospital environment...
I still have to get some crafts, and some other treats... But at least it is a work in progress...lol

I have almost recovered from my surgery..( scar revision from my breast reduction last year ). I am glad I did it before Hunter goes in... It kept my mind off of the fontan coming up.. maybe a few extra weeks of peace of my mind... Now I am starting to get anxious, scared.

I thank everyone for Keeping Hunter in their thoughts, prayers or whatever it is that you do. I appreciate it, and ask.. please continue to think of him and help him during surgery.
I will be updating this blog from the hospital after Hunter goes in... ( more than likely I will not be responding to e-mails-- NO TIME-- so please leave messages here, I will see them here first...


thanks

My Angel..

Do I need to say anymore...

Well , I am home from the hospital. ( I had surgery on Friday.) nothing to important. but thanks. I am still really groggy, and on lots of pain meds.... so please excuse my spelling.

Hunter is doing great, he has a bit of a runny nose today, but that could be allergies or just a runny nose. Hunter will soon be on house confinment before surgery.. I should be recovered in a few weeks, just in time for Hunter to go in...

Talk soon.

update

We got the call tonight. Hunter's surgery is booked for June 30...
My stomach is turning and turning already.

We have DATE!!!!

So we got a call last night about Hunter's Fontan surgery.
He has a tentative date of June 30 or July 7 . They are going to confirm the date later today or monday.

On one hand I am finally releaved that we have date, BUt also torn because I don't want to see Hunter go through any more surgeries. I know He doesn't really have a choice, But it leaves this pit feeling in my stomach. No mother want to see their child in pain.. Especially after they have endured more in their two years of life, than most people do in a lifetime.

So I guess we will start to get ready for the surgery, and I will try too get some stuff around here done.

WOW... 1 month away... and I hope after that we will have a good recovery and be living post fontan. ( I heard it is great ) I sure hope so.

Where has the month gone????

So this month has gone by very quickly. It has been full of appointments for the kids. We are STILL waiting for a date for Hunter's next surgery. As we just found out, He was only presented for discussion on May 25.. A full month after his cath... agh!!... So we are waiting to hear what they have planned..

But as far as what has been going on, Hunter has always been a boy who loves trains, figurines . So this month when I bought a bunch of trains for him ( off the Internet- really cheap ) he was ( and still is ) very EXCITED.. He played with them non- stop for hours and hours




A funny story to go with picture... I was up stairs getting the other kids ready for bed ( and as always ) Hunter was watching TV downstairs. Or so I thought. After about 10 minutes i go back down, and I couldn't find Hunter...mmmmmm......
But the was one of the black storage boxes on the floor in front of the TV.... So after running to get the camera, lifting the box with one hand and taking a picture with the other, this is what I found....LOL... Hunter asleep under the box... Sweating, and curled up in a ball... it was so frigging cute...


Well with the month almost over, the weather has been getting warmer. And with that said, out come the summer clothes and hats. Although really not warm enough yet for shorts..

I got Hunter a new bucket hat and I must say that it is really cute.

mmmmmmmmm...... Well I finally got a laptop, ( which I am using right now..) LOVE IT... But the best part is that it is really good for Mackenzie. It has a tablet writer program on it for her. Meaning she can use a pen and write on it and it will change it to typing for her. or she can use the pen instead of a mouse.. She has been using it to write some of her words out. SO FAR SO GOOD...


SMILE, CHEESE.... let me see mom!! That is Hunter new thing.. can you tell...lol
He wants to have his picture taken and then see it right away.. Thank goodness for digital cameras. Hunter is really getting big, he is about 28 pounds now. He is eating some new foods , which is always a good thing.


May has been a busy month for the heart community too.. Gavin made it home and is recovering well. Sofia is still recovering from her transplant. And without saying it is always so sad when a heart baby dies, and this month was hard with the passing of Wyatt. ( read his blog for his full story ). I am fortunate that Hunter is doing so well, considering his diagnosis and other issues ( jugular stenosis ). I know as a heart mother that we can't take a single day for granted, But I have to learn not to dwell in the past. ( ongoing thing I guess.)


Well I must go and put the kiddos to bed.... Have a great night.
I will post when I hear more about a surgery date...

Not Much New..

So it has been a few weeks since my last post. Sorry... I have been busy with trying to clean the house, garden ( or really trying to remove thousands of weeds from the grass and garden )..lol.
Trying to keep up on doctors appoinments and trying to find funds to raise money for Mackenzie's swim spa...

So the good thing is that not much has been going on. The kids are enjoying the warmer weather, although you still need a sweater. I have enjoyed going for more walks with Hunter , and Tristian loves going for bike rides.

I took Mackenzie to see Hanna Montana the movie last week ( mothers day ), it was really a good movie, Some really good songs, and it was a good time out.... ( not the car ride home though...). I think maybe this weekend I might take Tristian to the movies ( I still have some coupons left....lol). I really want to go and see Wolverine..... anybody want to go with?????

Well both kiddos are signed up for summer camp....YEAH!!! and I am not sure what Hunter will be doing.... We are still waiting for a surgery date..... I am guessing September.... ( of course because all of our birthdays are in that month...lol)

So, Happy long May 24 to everybody.. ( victoria day weekend--for my american readers...lol)
I hope that everyone has some good weather and gets outside.

** Good Update** Gavin is home from the hospital-- GO GAVIN GO!!! -- Lets hope that he recovers and gets back to his normal playful self...

Please remember that their are many heart families still in the hospital, please keep them in your thoughts and prayers ( Sofi, Wyatt..) Many others waiting for Hearts.

Update ** unfortunatley Wyatt lost his brave fight with many CHD's. My thoughts and prayers go out to Lisa and his Family. He was a brave little boy, and in his too short life he touched many lifes and made a difference in the lives of many without ever meeting of them. **

Back home .....

So, Many of you know. That the first weekend of May is the mom's getaway weekend. ( this is a weekend of moms to get away from the stress and our kids, to come up with new ideas and regroup...-- these are moms of special needs children, whether it is physical, mental, or severe health problems.

We get away from the crazy life from friday night to sunday afternoon. It is a great time to make new friends, reconnect with old ones, and a time to share stories, get new ideas and just relax, time to see what is truly important-- our families....

I have to say that this year was really the best bunch of people that we have had. It is so nice and humbling to be in a room of women who " GET IT". I don't have to explain my child's illnesses, they understand and except me and don't JUDGE me based on that. Many of these women although in different stages of the journey, have loads to share. Many of us have been on this journey for a long time, some have more experience ( which we learn from ) and some of them were just starting this journey. regardless of were we are, We all have something to offer, even if it is just a hand in friendship to say I am here.

So to all the ladies, thankyou for having such amazing children. And I hope we can get together before the next weekend away, that is over 361 days away!! ....lol

I learned alot from these women, acceptance, strength, forgiveness ( I have a hard time with this.) and I am still learning. I have been on this road a long time, and I have come to many forks, bends and hills, even some pot -holes, I know that it is a life long journey and that I have picked up many hickers ( friends )too...lol But they make the travelling managable.

I hope that many more moms ( expecially my fellow heart moms ) can come out next year. you would add a great amount of knowledge and fellowship to this group, and we love having new moms...

And to a special mom ( M.) you are really a great friend, I learn so much from you. Compassion, acceptance, forgiveness ( yes... I am still working on that, it will take a long time. ), and friendship.. don't ever change, because you give me strength.. hugs~~
Hugs ~~~ to all the moms

mmmmmmmmm.... No there are no pictures.... Not that I would post anyway....lol

So, to all my old friends and new friends, have a great day.

And just a little side note...

Gavin is still in the hospital, He has a fever and some other issues going on, please keep him in your thoughts and that he may get home soon. ( link is at the bottom of the blog-- left hand side )



“I laugh, I love, I hope, I try, I hurt, I need, I fear, I cry. And I know you do the same things too, So we're really not that different, me and you.” ~ Colin Raye

Little Gavin is having a rough recovery, please keep him in your thoughts and prayers...

There seems to be a few Heart kiddos who need prayers, good vibes ( whatever you feel inclided to send ). Please check out their blogs
Gavin,
Sofi.... ( yeah she is off ECMO)
there are many more too...

Check of the link

Another one of Hunter's Heart friends is having surgery today ( last minute).
SOFI IS GETTING A HEART!!!..... they have been waiting for so long. Please keep Sofi in your thoughts and prayers... Her link is a the bottom left hand side of the blog...

Gavin is still recovery, please keep him in your thoughts too.

Check it out..

As I mentioned Yesterday, Gavin was having his Fontan. He did very well, and is now recovering. Please keep him in your thoughts ( check out his blog for some great pictures and more updates. )

Way to go Gavin!!!!

Picture To Ponder...

Right Internal Jugular Vein Stenosis....

So my scanner isn't working...So I had to take a picture of a scan, not an easy task...lol

But regardless you can get the idea. If you look at the picture on the left hand side you see a large dark image going down the scan and in the middle it gets really narrow... This is the jugular stenosis,that is how narrow his jugular vein gets.

In this picture you also see two wavy lines coming off the jugular, these are veins that have grown to try to pick up the work load that is being restricted because of the stenosis..( they should not be there..)

The thin wire that loops in the picture is the cath thingy( don't know what the name of it is..)

We are waiting to see what they are going to do.. ( may take weeks to get an answer... )

But, for all those who were asking, that is the best I can do..lol

Remember

Gavin is currently is surgery for the fontan. Please keep him in your prayers, thoughts..


My thoughts are with you Faith and Adam... I wish I could be there... hugs~~

His link is at the left hand side bottom (see for details)

We are home..

Yes, that right, we left first thing this morning. Because you know after you give the CORRECT dose of dex for croup, they get better.... sigh...........

Hunter is fine, we had a little nap after we got home.. feeling better.

This is what we know
1. His heart is strong and in really good shape... ( good news )
2. This jugular stenosis will have to be fixed.. when and how is still unknown...

now we wait for the doctors to meet about his case and let us know ( could take up to 3 weeks)
Until then, they are assuring me that this stenosis will not be of any concern.. ( I hope so )

Thanks to everyone who e-mailed me and FB.. i really appreciate it..

PLease keep Hunter in your thoughts...
And please remember Gavin is having his fontan tomorrow, please keep him in your
thoughts too....

Update #2

Well it is offical we have to stay the night. But not because of his heart... Because of the croup !!! They didn't give him enough Steriod the first time ( although I told them that was not enough !!!!) Shit I am only his mother, I have delt with his croup for years now , considering this kid gets croup all the time... WHAT DO I KNOW!!!!!

so they gave him half of the dose... BIG surprise it didn't work....
So now they want to monitor him...WT!!!F... If you would have given him the right dose, we could have gone home......

OH WELL!!! what can you do... He will have his own room, so I will stay with him, His dad will stay at his sisters... Then hopefully we will be outta here in the morning....
Actually i am watching the news on the big screen beside me and the traffic is aweful !!!, we would be stuck in it for hours and hours.....

On a funny note... Hunter got a stuffed cat while in today, a webkinz. Just like his sisters that he constantly takes... He thinks it is so funny to through it every where and say " oh no!!! JUMP!!!!" ha ha ha ....lol

well I won't have access to the computer for a while, so hopefully when i get home tomorrow I will update again...
thanks

Drea

update #1

So the cath is over and was almost 4 hours.... A little more than the 2 hours planned.
Here is a really quick reason why....

His heart is great all preasures are and were they should be, all measurements taken where very good. ( that is the good part )

Soooooooo..... They found something in his cath that they didn't really understand. ( really, with my kids, that is so weird!!!....lol NOT)

Hunter has a very rare ( never seen here...) interior jugular stenosis.... so what does that mean????? I am still trying to figure that out. But by the picture that I was given ( I will post later ) imagine your jugular vein that runs down your neck.. imagine it the shape of a hotdog... ok... now ( higher up that anyone has seen here there is a pinch , a very drastic narrowing.
So if you are still imagine the hotdog half way down on the hotdog imagine it to be the size of a small piece of tube about the 10th of the size it should be.......WOW...... how did they catch it you ask????? well Hunter had a few extra veins that seemed to coming out of now where, so when they followed them up SURPRISE.... and because this is not in the chest but in the neck.. they had to call Neurology, and they had to come and do an assessment.... Hence the extra time!!!!

So needless to say we don't know what is going on right now. but this is not the best news. but I have been told that surgery will have to be done on it, but the surgeon doesn't think it will be before the fontan.... FUN, FUN........

And on top of all this. Hunter woke up with croup... because of being intubated , the tubes rubbed or irratated his vocal cords. so now we are treating that, so right now we don't know if we will be leaving tonight or tomorrow... OH WELL....

BUT, I guess on the bright side, he has no symptoms of the jugular stenosis, so they think that is good!! but this means that he will need a MRI ( which is more sedation.. general... ) We have to make sure that this doesn't affect his brain. Like our Family needs anymore crap!!! NO thanks, I will stick with the crap I already have.... my plate is full.

Other good news. He is ready for the Fontan, Now it is just a matter of booking it... But will it be sooner becasue of the stenosis???? I dont know...

Please keep Hunter in your thoughts tonight. I hope we go home....

Drea

We Are Here.

Last night went pretty well, we stayed at the hotel ( Hunter had a pretty good time. )
And so did mom. I went in the pool and the sauna and hot tub to relaxe, while Gerry had the little guy.

He slept until we had to go to the hospital this morning, and was not impressed that it was cold out and raining...

Hunter had his moring stuff done before his cath ( chlorhexedine wash ) and BP, and O2s which were low because they used his foot. But anyway. He watched some movie ( Toopie Bino ) before they came and got him, then dad got dressed in the hospital white jumpsuites ( so you can go into the cath lab )
The put the mask on him, and he went to sleep fighting, So I am going to assume that he will wake up fighting.

As of right this minute we only heard that he is ok. but no word if he is done or anything else. The cath is scheduled for 2 hours roughly !! but that doesn't mean much.. He has been in for over 2 hours now.

Please keep Hunter in your thoughts ... I will update when I hear more ( If I can get ont he computer, there have been kids playing it for hours now, this was first chance to get on it since 8:30 am... It is 11:30 as i type....lol )

Drea

We are off

Well we are heading up tonight to Toronto, we have decided that it will be easier on Hunter to sleep at a hotel across the street from the hospital rather than try to drive 2 hours in the morning in the rain ( which they are calling for ) and not being able to eat or drink. ( Hunter can't eat or drink that is. )

So Hunter is the first case tomorrow.( But they are never really on time ) I will try to update from the hospital tomorrow.....

Wish us luck.

BYE.