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.

There and Back Again!!!

Well today was the day for Hunter go to the pre-admit day for the cath on Monday. A fun day filled with blood work, x-rays, ECG's, and an echo.

Hunter did very well for the echo and we DIDN"T have to sedate him!!!! WOO HOO!!! we just brought the portable DVD player and a new movie of Toopie and Bino. He didn't move really at all.. They got all the pictures in about 15 minutes and even the ECG was done too.... I am so thankful for the DVD player.. ( Did I tell you have much we had to argue ( fight ) to get them to do the echo non-sedated!!!) HE ROCKED THAT ECHO!!!!! PERFECT KID!!!

The blood work was ok, if you can ever say that. And the X-ray was anything but fun. Hunter screamed " All done mommy, Please all done " talk about break you heart. Good thing it didn't really take long.

Then we had to go to cath " teaching" whatever... I can see if you have never had one before... but please, talk about a waste of time.

Gerry asked "can we just sign the consent form and go home??" , "Hunter has had Caths before and we understand what is involved."

that nurse was so ignorant..... " are you refusing teaching?"

"ummmmmm ..... no we aren't refusing it... we are just not in need of it..."
Sooooo .. After a couple of eye rolls ( by the nurse, not me!!!--- surprised!!!) she said... Well the doctor is waiting....

seriously..... we only waited for almost an hour..( mean while we got everything else done in an hour ) .. FINE...

They don't realize, I just wanted to get out this germ filled placed. People coughing everywhere and not covering their mouths ( PET PEEVE!!!) and with Hunter having the cath on monday, my goal, was to get him home without picking anything up!!

So I went in, signed papers.... and we left.... A WHOLE 5 MINTUES... and a few of them( mintues that is...lol) were spent looking for the time for the cath on Monday.. ( which we are first....... YEAH!!!! we need to be there at 7 am... although it won't probably start until 8- 8:30 am..)

That was really fun, after that was all said and done, the nurse comes in and says.... " blah, blah ......... and after the cath on monday someone will teach you how to take care of the wound and blah, blah..... " ( I replaced her boring conversation with blah, blah... )
ok..... so why are you teaching today ... and then on monday???? what a waste of time people... Or more so what a waste of money in the health care field... no wonder our health care is so frigg'n expensive people...!!!

That felt better....... ( although I deleted most of my post...lol)


So now for a great weekend, with great weather... and then the fun day on Monday ( cath day ).
But, as I said to the doctor today " It isn't like we have a choice... He must have this cath to go on in the surgeries... and he needs the fontan to get on with life.... so really there is no choice.." He didn't diagree with me... just tilted his head and smiled...

Please keep Hunter in you thoughts on Monday. I will try to update this blog from the Hospital, so keep an eye out on Monday.

And keep Gavin in your thoughts too ( he gets his fontan on Wednesday ) GOOD LUCK BUDDY!!!

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!!!