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..