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