my son's cath is today...

[LuvMyEvan]

Evan is having a cath. today. This is his first invasive procedure since the Ross-Konno at age 4 1/2 months (over 4 years ago). I couldn't sleep at all last night so I got up early this morning and once again updated his LiveJournal. I ditched it after things got 'normal' for us, and now that we're back in the world of chaos I am going to keep it updated again.

So here is the link for anyone interested (by the way, Ben, if you see this -- there are some really old -- fall of 2000 -- comments in there from you). It was interesting to go back and re-read those so I haven't moved them into 'memories' yet. There are 2 new-er entries now, though.

http://www.livejournal.com/~evandeam/

Thanks all,
Katie

 

[ericaj]

Little Ethan and you are in my thoughts. I am not sure if by now you are done with the Cath, but please do keep us updated!! Thoughts are with you!!

Erica

 

[Karlynn]

Evan's cath

Evan's cath

Katie,
Evan has been in my thoughts and prayers. I hope the cath went well. Let us know, when you have the time.

 

[gijanet]

Update from Evan's website

Update from Evan's website

Here is the pretty good post from Evan's page (below). Pretty good in that the cath went well, but he will still have to have surgery, just not immediately. Sending hugs. Janet

We're home!
Well things went well -- some things even better than expected. Here is a run-down.

11am -1pm -- arrived at the hospital and hung out in the room waiting for things to begin. When the anesthesiologist arrived to do the IV, Evan went nuts! He screamed, "I HATE DOCTORS!" and "I HATE THIS HOSPITAL!" It was awful! When they did the blood draw he was even more upset, "PUT MY BLOOD BACK IN ME!" It was difficult to say the least. Once it was finished he was better. They gave him some valium to calm him down, and I'm sure that helped.

1pm -- we got to walk with them down to the cath lab doors. He had to go in with them by himself, though. That was even more difficult. I managed to hold back my tears until he got in there.

5:40pm -- The doctor came to talk to us and let us know that Evan had done well. The right ventricle is enlarged (22mm, normal for his age is 14-16mm). The insufficiency on the pulmonary valve is what he expected to find (he'll have numbers for us after he does the math), and the stenosis is minimal (gradient = 10). The left side of his heart was all good news -- the left ventricle is a normal size (24mm), there is ZERO insufficiency in the aortic valve (his old pulm. valve), and the aortic arch which had been narrowed is no longer narrow!!

6pm - 2:30am -- Evan got back to his room (the new room, which the phone did not work in, so I apologize if anyone tried calling and it wouldn't stop ringing ... we had no idea). Evan ate some soup, ice cream, & milk. He was very exhausted and not near as upset. He wanted me to sleep in his bed with him, which I did. His monitors were going off non-stop it seemed. They didn't like his respiration rate below 17 and his was frequently at 14-16.

At 2:30 am he woke up and wanted his hat (from Ben). =) He slept with it the rest of the night. We were all awake for the day by 7am. Evan pulled his own arm bandages off all around the IV. He didn't want anyone to touch the IV until 9am. As a matter of fact, when I tried to help with the tape he said, "Leave me ALONE you little stinker!" Finally he let the nurse (well, he didn't have a lot of choice as we held him down) get it out. He was okay once it was out, though. He was discharged at 9:15am.

So, mostly good news... surgery will probably be this summer (but it's highly unlikely that it will be any sooner, and there's a slim chance it could be put off even longer).

Thank you to all who have been saying prayers, keeping us in their thoughts, etc. It is greatly appreciated!!! =)

 

[LuvMyEvan]

Thanks Karlynn...

Thanks Karlynn...

Katie,
Evan has been in my thoughts and prayers. I hope the cath went well. Let us know, when you have the time.

Evan's cath went really well! Thanks so much for your thoughts & prayers. They certainly helped see him through it. He was *NOT* impressed with the IV (he screamed, "I HATE DOCTORS!" and "I HATE THIS HOSPITAL", and "PUT MY BLOOD BACK IN ME!"). He did fine after it was in, though. He woke up at 2:30am wanting Ben S.'s special hat he gave Evan... and slept in it the rest of the night (Ben, I hope you read this because I forgot to tell that part on your voice message).

He ate some breakfast this morning, practically ripped his own IV out (he wouldn't let anyone else touch it... when I tried to help with the tape he said, "LEAVE ME ALONE YOU LITTLE STINKER!"). The nurses adored him. They went on and on about how cute & sweet he was. They laughed with us and cried with us (when the IV went in and when they carted him off to the cath lab). All in all it was a good visit.

The details:
Starting with the right side of his heart -- His right ventricle is enlarged (22mm, normal for his age is 14-16mm). The insufficiency on the pulmonary valve is what they expected (he'll have numbers for us after he does the math), and the stenosis is minimal (gradient = 10).

And the left -- The left side of his heart was all good news!! The left ventricle is a normal size (24mm), there is ZERO insufficiency in the aortic valve (his old pulm. valve), and the aortic arch which had been narrow (as an infant, due to lack of blood flow) is no longer narrow!! I'm not really sure how this happened because they thought (by echo) that he had 'trivial' leakage in the aortic valve, and that there was still a slight bit of narrowing in the transverse area of the aortic arch. But miracles happen and Somebody upstairs looked out for Evan, because all is well on the left side.

So based on the insufficiency in the pulmonary valve, his Ped. Card. guesses that he will require surgery this summer (but he'll let us know for sure in 2-3 weeks after he's had more time to review his findings, do the math, and meet with a few other docs). But no sooner than summer! =)

Thanks again for the prayers -- they've certainly meant a lot to us, and have made a difference!

 

[LuvMyEvan]

Thank you!

Thank you!

Little Ethan and you are in my thoughts. I am not sure if by now you are done with the Cath, but please do keep us updated!! Thoughts are with you!!

Erica

Thanks so much, Erica. =) Evan did really well and is now home. I posted the details in another thread in this same folder... and as I had very little sleep last night, I am going to just say it went well, nothing surprising (other than good surprises). Thanks so much for the thoughts! =)

 

[catwoman]

Katie:

Am glad the heart cath went as well as it did. Now **you** need to recover from the ordeal!

 

[LuvMyEvan]

Katie:

Am glad the heart cath went as well as it did. Now **you** need to recover from the ordeal!

First -- what a BEAUTIFUL cat!! Is that a persian? We used to have a black persian... LOVED her (even though I'm not much of a cat person, she grew on me -- she was more human than cat, anyway, lol). =)

Okay now to answer your message -- thank you for your thoughts! You're right about me recovering. I was so stressed! I feel some relief but I'm still not ready for the surgery. I never will be. It was so much easier when it was just going to be "one day" rather than "this summer". I am feeling better after returning to work today, though. It's a more 'normal' feeling, I guess.

Anyway, thanks again! =)

 

[McCln]

I remember my first cath, not yelling, just screaming bloody murder as the needled were stuck in me. It is hard, when you are not used to needles and doctors at that age. He may have the problem with needles for some time. I still hate them at age 40, two bypasses and several cathes before age 9. So I understand your pain, my mother went through the same thing. Just try to hang in there. Just glad the surgery is not right away, you have time to get ready. At least you know what is going on. Keep us posted. Hugs for you both today.

 

[LuvMyEvan]

Thank you!

Thank you!

I remember my first cath, not yelling, just screaming bloody murder as the needled were stuck in me. It is hard, when you are not used to needles and doctors at that age. He may have the problem with needles for some time. I still hate them at age 40, two bypasses and several cathes before age 9. So I understand your pain, my mother went through the same thing. Just try to hang in there. Just glad the surgery is not right away, you have time to get ready. At least you know what is going on. Keep us posted. Hugs for you both today.

Thank you, Caroline! It wasn't so bad, I guess, just hard to explain to a 4 year old that some things they just HAVE to do -- even though they really aren't fun!

He did well, though, and has proudly been wearing his Superman hat from Ben S. (on this site) and his family. He LOVES his hat and gloves and has been showing them off, too. So that seems to have helped him forget about the hospital experience. =) This was actually his 3rd cath., but both previous ones involved valvuloplasty, as well, and the last one he was only 3 months old for. That made this a whole new experience for Evan. But he's a tough guy... lives up to the meaning of his name (young warrior). =)

Thanks for the thoughts... I would hate getting a cath... I can only imagine what my little guy thought of all that. Good thing he slept through most of it!

 

[McCln]

I made a mistake on the two bypasses before 9, the repair was eight years old and replacement at age 36. Sorry. But I still hate needles. Have a great week.

 

[Curtsmum]

Ive Only Just Found This Forum, I Thought Id Say Hello.my Son Curtis Is Seven. He Had Surgery When He Was Eighteen Months Old.he Had A Cathiter In 2003. We Have Just Found Out He Needs Surgery Within The Next Twelve Months, To Replace His Left Mitral Valve.it Has Come As A Big Shock Because They Always Told Us They Would Rather Wait Until He Was Around Thirteen.We Understand That He Needs It Doing Sooner. We Dont Know If He Will Need Another Cathiter First As They Havn't Told Us Much At The Moment. My Thoughts Are With You And Hope Every Thing Goes Well. Love Paula