surgery likely looming...

[LuvMyEvan]

Hi all,

It's been a while since I've checked in (again). Things have been insane at work and I'm exhausted when I get home so I haven't checked in for a bit.

My son, Evan, is due to have a heart cath. on March 3rd to determine how long he can wait before his next surgery (to replace his donor pulm. valve). They are guessing "no later than June" from what they're seeing now but won't know for sure until after the cath. It depends on the pressures in his lungs vs. pressure in his rt. ventricle.

I'm nervous as heck and horrified about having to tell him about it this time. He was 4 1/2 months old the last time he had anything invasive done to his heart. He went nuts over being sedated for an MRI (of his brain) this time last year.... I can only imagine what knowledge of a cath. will do. Any ideas??? Tips for telling a child who is 4 1/2 years old and already has odd fears??

We're getting together with Ben Smith (from this group) and his family again this weekend. Evan knows that Ben has a "Superman Heart" like he does so I'm hoping that will help when the time comes to tell Evan. But I don't know when the right time is, or how to go about it. The day of the cath? The day before? UGH! And I'm so not ready to hand him over for surgery again. I don't know how I'm going to do it. Stress has caused me to lose at least 25 pounds since Oct. and that's WITH medication to help with the stress. I think keeping it in is what is doing it, but I can't possibly let on to Evan that I'm worried.

I'm also feeling bad that we didn't see about Make-A-Wish sooner. I was hoping to do it this spring/summer. Now it's on hold indefinitely and all the "what ifs" are playing in my head.

So anyway, if anyone has any advice, tips, etc..... I'm listening.

Thanks!

 

[Karlynn]

Katie, unfortunately I don't have any immediate words of wisdom to offer. It's been a while since my kids were as young as Evan. All I can do is offer a big cyber hug. I always said I'd rather deal with heart issues in myself than in my children.

What I will say is that the resiliance of children has always amazed me. I used to teach preschool multiply-disabled children. Many were always going in for one surgery or another. Their bravery far surpassed any adult I've ever seen. Many were very matter-of-fact about their procedures. I usually found the parents to be much more stressed over the issues. Now that I have my own children, I understand why!

My prayers are with you.

 

[geebee]

Katie,
Maybe a moment will present itself during your visit with Ben. Obviously that will be a time when Evan will probably talk about his situation and things might just work out.
I agree with Karlynn, Evan might take it better than you and think of it as an adventure. Make sure there is a prize at the end of his adventure and that is what he will look forward to - the cath may just be a stepping stone.
Speaking as someone who has always been the patient - it is easier being the patient than the loved ones waiting around.
BTW - he sure is adorable. I hope all goes smoothly.

 

[Bionic Man]

I feel for you

I feel for you

I went through the cath and the surgery and I know it was all harder on my wife than on me.

I hated the cath experience and the heart surgery was more bearable to me than the cath. I realized very quickly that the Versed (sp) was not working for me and I was basically un-anesthetized so I'm sure that had a lot to do with it. Once I got more, I started to feel better but I sure felt the prep work (the scrubbing and the initial cut). I think everthying would be much better if they really make him "out of it" before doing the procedure. Most of the time they keep you pretty much awake. I'd say be very sure to let them know of your son's issues and they'll be anxious to work around them.

They should be very good about it and give him what he needs to feel comfortable. If not then smack them around until they promise you every possible concession.

I'll be praying for him to have a good experience.

David C

 

[LuvMyEvan]

Katie, unfortunately I don't have any immediate words of wisdom to offer. It's been a while since my kids were as young as Evan. All I can do is offer a big cyber hug. I always said I'd rather deal with heart issues in myself than in my children.

What I will say is that the resiliance of children has always amazed me. I used to teach preschool multiply-disabled children. Many were always going in for one surgery or another. Their bravery far surpassed any adult I've ever seen. Many were very matter-of-fact about their procedures. I usually found the parents to be much more stressed over the issues. Now that I have my own children, I understand why!

My prayers are with you.

Thank you, Karlynn, for the reply. Thankfully we got a wealth of information at Evan's parent/teacher conference tonight. He attends an MRDD pre-school and they told us to do a social story with him about the cath. and again later about the surgery. Since they know him well they were able to help us sort out whether to wait to tell him about the cath (which was my plan) or to tell him early and give him time to ask questions and not "surprise" him with a bad surprise. They gave us ideas, even, on how to approach it. So I'm feeling better about it now. Though my stomach is in knots about the idea of actually telling him. I think I'll do it soon, though.

Thanks again..... I agree with you, I'd rather it was me than him. I remember so vividly thinking when this all started that I'd give him my own heart if it would make him better. I wished so badly that I could. He's such a gift. He has taught me so much in life.

I should have added in my first post that Evan also has developmental delays. He's behind in social/emotional areas. He's advanced academically, but has serious social/emotional delays. We think he'll end up on the PDD (maybe Asperger's Syndrome) scale sometime. Right now they can't say for sure if he has it because of the brain damage which resulted from his heart not being detected until it was nearly too late. All they know is delays are present along with irrational fears, etc. So I'm so glad to have the help of others to guide me in how to approach this with him now that the time has come.

*agh*

Thanks again!

 

[LuvMyEvan]

Oh my gosh!

Oh my gosh!

Thanks David (that's my hubby's name, too).

I can't imagine being awake for it! The Ped. Card. actually asked us if he should be knocked out for it or if we thought he could handle it awake. I said, "you've talked to the folks at his school, you know he can't handle any type of fears... you'd better not try it awake." So I hope he realizes that Evan needs to be TOTALLY out for the cath. I'll have to make sure prior to our visit. I plan to call with a few questions anyway, so I'll add that to my list. Thanks for bringing that up.

Thank you for the prayers! It certainly means a lot! He is a tough one to handle with all of this now that he's old enough that he needs explanations. This was somewhat easier when he was small. This is the first invasive thing they've done since he was 4 1/2 months old. I'm nervous as heck about telling him but I know that I have to do it this weekend. Somehow, in the next week -- at least -- I have to tell him. I'm hoping he takes it well.

Ben (Smith, from this VR.com group) is coming over on Saturday with his family to visit again. Hopefully I can tell Evan before that so he can talk to Ben about it, too. Someone who's "been there".

Thanks again for the kind words and prayers. I'm nervous as heck. I explained more in my last post, but Evan has some social/emotional delays. He's advanced academically, but has to have social/emotional things really explained and drawn out for him to 'get' it. So hopefully I get this right!

 

[Karlynn]

Katie, let your motherly instincts guide you. When my song was baby and had some serious issues with his trachea the wise old pediatrician I took him to told me that he had found through years of practice that a mother's intuition was right 99% of the time.

My prayers are with you.

 

[perkicar]

Thanks David (that's my hubby's name, too).

I can't imagine being awake for it! The Ped. Card. actually asked us if he should be knocked out for it or if we thought he could handle it awake. I said, "you've talked to the folks at his school, you know he can't handle any type of fears... you'd better not try it awake." So I hope he realizes that Evan needs to be TOTALLY out for the cath. I'll have to make sure prior to our visit. I plan to call with a few questions anyway, so I'll add that to my list. Thanks for bringing that up.


If I had to guess (and they can tell you when you call), I'd say they keep a child pretty well sedated for a cath. They're more likely to move, etc. I remember having to "take a deep breath, hold it" a couple of times during mine, but I suppose if they gave him enough versed he'd be cooperative but very relaxed. My doctor used Fentanyl and Valium, so I was very awake the whole time.
Katie, listen to your gut, you'll know what to do. Be honest and reassuring, even if you're not feeling very assured inside. Kids pick up on your fear. But also let him know it's OK to be scared, that the doctors have to do this to help his "superman" heart. Maybe he got into some Kryptonite? At any rate, take care of yourself during all this. He needs his Momma. And you can come to us anytime to let us give you cyberhugs and reassurance. I think I'm going to really appreciate this forum as I go through MY surgery.

 

[Turkey Hunter]

Katie,

It is very dfficult to determine the correct timing in speaking with Evan or any child that is facing either specific fears or health porocedures.

As sure as it seems that Evan will become extreamly fearfull of facing the cath and looming surgery, I believe 'little superman' will suprise all of us concerning his intuition of his medical condition and lifelong doc appointments and procedures and tests.

I know he is only 4, I just have to believe that God has given all of us some understanding (or better yet since of preparedness) about the unkown.

Now I'm not saying he won't have some fear, maybe even allot, but he will find in himself the strength and confidence needed to face the cath and upcoming surgery.

God Bless & See ya Saturday.

Ben

 

[Bionic Man]

Just wanted to let you know I can identify

Just wanted to let you know I can identify

Thanks for the kind response. I've been thinking of Evan a lot since I have 2 4 year olds. (twins) They're funny, quirky and very quick to say that they wish their brother could take over for them.

( In the emergency room getting stitches in a bitten lip our one boy says... It's my brother's turn now!! )

Their older brother has asbergers (mild but still very prevalent in his behavior ). Believe me when I say I know what that's like. He has a lot of fears, mostly surrounding fire etc but I know what it's like. Usually irrational fears accompany intelligence. (strange but true). Also they tell me that people with my condition (Marfans - stretching of aorta and valves) have more phobias than normal people.

I don't know if you remember my second or so post where I listed my top 10 phobias, most of which I would be facing by having surgery.

The interesting thing I found was that prayer, mine and others, literally changed my reaction to things that normally would have sent me into hysterics. (I'm not good with medical things) But the surgery seemed like no big deal and each weird and upsetting thing seemed do-able.

Evan will have a lot of people thinking of him.

David Cross

 

[LuvMyEvan]

Katie, let your motherly instincts guide you. When my song was baby and had some serious issues with his trachea the wise old pediatrician I took him to told me that he had found through years of practice that a mother's intuition was right 99% of the time.

My prayers are with you.

Thanks so much Karlynn. You are so right about the motherly instinct. When Evan was first born I was constantly questioning his sweating, heavy breathing, need for glucose water to keep his blood sugar normal. I kept being told that the breathing was normal for newborns, the sweating was probably just him "adjusting" to the outside world, and the blood sugar issues were normal for 'large' babies (he was 8lb. 10 oz.). Being my first, I trusted them, but kept asking about it anyway. We had the maintenance crew in our room no less than 4 times to change the thermostat (literally remove it and put on a new one) because we were sure it was broken if Evan was sweating so much.

When we were supposed to leave the hospital Evan crashed. That's when the world of cardiology was introduced to us. He now has some mild brain damage because the left side of his heart was not functioning from the time his murmur "disappeared" to when he crashed (over a period of 3 days). I wish I'd been more demanding about everything because I was right. Something WAS wrong and I nearly lost him because he was so critical by the time they figured it out.

So you're right..... I need to just trust that and tell him as best I can. I am thinking it will be this morning. I am going to read the forums first and then start on a Social Story to explain it.

 

[LuvMyEvan]

Thanks so much Carolyn. The folks here have been so helpful. A few I know from elsewhere (Janet and Ben) and even those I don't know have been very welcoming. I'm glad I have this group to turn to. Folks who understand. IT's also nice to have the perspective of adults who've been through this since I can learn from their experiences what Evan might expect to experience. Because he's young he may not be able to explain as well, so it's nice to hear everyone else's experiences.

As for Evan's cath.... their initial plan was meds to help him relax but to keep him awake. I reminded the Ped. Card. that Evan doesn't always cope well with new situations and he was fine with sedating him completely. I'm nervous about doing that, too, but I think it will be better for Evan. Once he wakes up from it he'll be fine, I'm sure. It'll be the fear of what they're doing that will bother him.

 

[LuvMyEvan]

Katie,

It is very dfficult to determine the correct timing in speaking with Evan or any child that is facing either specific fears or health porocedures.

As sure as it seems that Evan will become extreamly fearfull of facing the cath and looming surgery, I believe 'little superman' will suprise all of us concerning his intuition of his medical condition and lifelong doc appointments and procedures and tests.

I know he is only 4, I just have to believe that God has given all of us some understanding (or better yet since of preparedness) about the unkown.

Now I'm not saying he won't have some fear, maybe even allot, but he will find in himself the strength and confidence needed to face the cath and upcoming surgery.

God Bless & See ya Saturday.

Ben

Hey Ben,

I think you're right... somehow he'll deal with it. I think that the best thing I can do is prepare him and answer questions as best I can beforehand. I had initially planned to bring it up the day of the procedure (or possibly the day before) but I realize now that it would be best to let him express his concerns and ask questions.

He may handle it much better than I'm anticipating. I'm hoping the Social Story will help. He really seems to respond well to those. I'm going to work on it in a few minutes, actually. I decided to check in here first.

We're looking forward to seeing you guys later today. Evan was talking about it again at dinner last night how it was just one more day. Then he said he wanted you all to come here (he has this weird thing about wanting to become a hermit in the house lately). So I said, "no, when we talked to Cindy you said you wanted to go there." Then he said, "Aw, I was just kidding about that." Crazy kid! I said, "too late, we're going there and besides you need to get out of the house some." He wants to see you guys, but like I said, he wants you to come here so he can convince you to have a sleepover! lol

Well I guess I'd better get busy..... I have some things to make, bags to pack, and then we'll be heading up there. Evan just now woke up and I was talking to him about how his heart was fixed when he was a baby.... and how Landon's leg was fixed when it was broken, and that your heart was fixed when it was broken and that's why you have the line on your chest.

Evan Patrick Deam (he told me to write his name to you... the whole thing). Ben Smith (he said to write your name, too). "Hi. And... I want to toss the spinning thing (frisbee) with you. I am bringing it to your house. I'm gonna play with you TODAAAAAAAAAAAAAAAAAAAAAAAY!"

Evan

(he typed his own name to sign his part of this message).

See you soon.

 

[LuvMyEvan]

Your Birthday

Your Birthday

Ben,

As soon as I posted that last message Evan wanted to know when your birthday is because he said he wants to sing you "Happy Birthday".



He asked me to make that face for you, too.

 

[LuvMyEvan]

Thanks for the kind response. I've been thinking of Evan a lot since I have 2 4 year olds. (twins) They're funny, quirky and very quick to say that they wish their brother could take over for them.

( In the emergency room getting stitches in a bitten lip our one boy says... It's my brother's turn now!! )

Their older brother has asbergers (mild but still very prevalent in his behavior ). Believe me when I say I know what that's like. He has a lot of fears, mostly surrounding fire etc but I know what it's like. Usually irrational fears accompany intelligence. (strange but true). Also they tell me that people with my condition (Marfans - stretching of aorta and valves) have more phobias than normal people.

I don't know if you remember my second or so post where I listed my top 10 phobias, most of which I would be facing by having surgery.

The interesting thing I found was that prayer, mine and others, literally changed my reaction to things that normally would have sent me into hysterics. (I'm not good with medical things) But the surgery seemed like no big deal and each weird and upsetting thing seemed do-able.

Evan will have a lot of people thinking of him.

David Cross

Thanks so much for your reply, David. Ah Asperger's.... it can be a pain. Evan never had the fear of fire until 2 months ago. Our next door neighbor's house burnt down. It was 2 weeks before Christmas. Evan loves their boys and plays with them often (they're older than him and treat him like a little brother). He had a really hard time with their house burning down. He kept asking about their television and toys, and was really upset that their house would have to be torn down for a new one to be built. He is okay now with the new house (it's almost done) but it's taken all this time for him to get over the old one. He was asking all kinds of questions about our house getting "fired" and was having horrible nightmares about it for a long while. We had the family over a few times since the fire and he's been okay with it after that. It sure keeps things interesting though.

As I said, I'm not sure that Evan has Asperger's, but if it's not that, then the brain damage he has mimics it -- that's what the Neurologist and Psychologist both said. He's supposed to see a Neuro-Psychologist after he's 5 to help figure it out. But you're right... high intelligence has seemed to come with the quirks. It's interesting. He had a huge meltdown last night. I was trimming his little brother's hair. Landon is 2 and doesn't enjoy that, esp. when I trim around his ears. Landon was screaming, so Evan lost it. He was horrified that I was going to hurt his brother. He cried and screamed and begged me to stop. Inside, he knows I would never hurt either of them, but he knew Landon was upset and he couldn't handle it.

Thanks again for the kind words and thoughts. You're right... prayers help tremendously!!!

 

[gijanet]

Katie, I missed this completely.

Katie, I missed this completely.

I have been so wrapped up this week with the MAW thing and tracking Bethany's progress, I didn't even check this forum. I am so sorry to hear this, and God knows I can sadly relate all too well.

WE agonized over the same thing last spring and, frankly, are agonizing over it again - most of the opinions I got back last year said to wait until just a few days before the surgery for kids this age. So, that's what we did and it seemed to work fairly well. When we started packing for the train trip, we had to tell Katie. (She now, unfortunately, associates the train with heart surgery.) ONe thing that really helped was Matty's Heart book and Matty's Heart Cath coloring book. We spent quite a bit of time with those on the train and during pre-op days. Matty is a little boy who undergoes a cath (in the coloring book, obviously) and surgery in the book. It explains pre-op and surgery and the ICU - in very simplistic terms, of course, but I think it really helped. When we had to NPO Katie, for example, we just reminded her that Matty had had to do that, too, and she really did not complain too much. Some parents criticize Matty's Heart as being too fairy tale like, in that Matty has one heart surgery and Poof! lives happily ever after, but hey, do you really want a children's book to go into all of the possible complications and possible follow-up surgeries? I think not!
It really helped us immensely and, sad to say, we will be breaking it out again all too soon. ONe thing that will drive you nuts as a teacher is that there are some obvious typos in the book - sure could have used a better editor before publishing, but Evan won't notice. BTW, Matty is three and blonde, and Katie was three and blonde, and Matty looks a bit like Evan - just a little blonder.

Another thing that I debated on, but we went ahead and did, and it helped, was take Katie on a tour of the ICU. There wasn't a child life rep available over the weekend at UOFM, so the social worker Barb took us on the tour, and Katie was able to see the machines and things and meet some of the nurses, so they wouldn't be so intimidating when she woke up to all of those. You will have to decide if you think Evan is ready for that or not. We had read MH, so those of course were mentioned in the book as well.

Katie, by the way, seemed to take things all in stride. When my mom came over to see us off, everyone started crying except for Katie. She just said, "Don't cry, Grandmommie. Me just goin to have heart surgry. Me be home soon." WEll, that really turned on the tears. 'Course Katie didn't really know exactly what all was entailed, but she seems to take everything in stride. Hope that is true this go round.

Sending love and hugs. Let me know if you need the info for getting Matty's Heart. Please keep me posted. Love you guys. Janet

 

[LuvMyEvan]

Thank you SO much, Janet!

Thank you SO much, Janet!

I actually broke the news to Evan yesterday (Saturday) morning. He handled it all fairly well. He doesn't believe me about the heart surgery -- he said, "it already did get fixed.... when I was a baby!" I said they would need to fix it again sometime and he said, "No! They already DID, Mommy!" His biggest concern about the cath is the "sleepy medicine". He talked to Ben Smith about it a little last night while we were at their house. I think it really helped him to know that Ben had "been there, done that" and even said something about liking the sleeping part, kind of like a nap. Ben also gave Evan a hat (which he tried to sleep in last night and still has on now -- he has other hats, but this one is "special"). So he really feels a connection with Ben. He even told me that the words on it say, "I will be your friend forever.... love, Ben" (which isn't true, but I'm glad he thinks so).

I started out by looking at his old pictures with him. We looked at all the pics of him in the hospital.... and talked about his bandage that covered where his heart is. We talked about how he had the surgery and it made him feel better. He was fine with that. But he may not be when he realizes he has to do it again. He was curious about all the machines, tubes, wires, etc. I told him what they all were for and made sure we looked at the pictures from when he got back home and was all better (and even dressed up for Halloween a few weeks later). He did really well, but still there's the denial.

I'm glad Evan handled it so well, really. The truth is, though, that I haven't told him much about the cath. other than they will use a camera to look at his heart. I didn't tell him about the boo-boo on his leg or them going inside of his heart or anything. I know that may end up being a 'bad' surprise but I know he will freak out at the idea of getting one so it's better to explain afterward on that part, I think. Now to get him to realize that he WILL be having his heart fixed again... I'm so grateful for Ben. He was very helpful in talking to Evan last night. Evan was more concerned with wanting to have a sleepover there, but that's good. That means he isn't worried. That or he's in serious denial.... but either way he's handling it well.

How is it going with MAW? Have you heard back yet? I *LOVE* reading your stories about Lola Bunny and Katie! lol That is hilarious!!! So you're to be a grandma, huh? lol I love it! My husband was cracking up this morning reading that message. He is so jealous... he wants a girl so he can have a 'daddy's girl' because my boys are mama's boys.

So what is in store for lil miss Katie now? I see in your sig it says surgery maybe within the next month or so??

 

[gijanet]

oh, no.........

oh, no.........

I actually broke the news to Evan yesterday (Saturday) morning. He handled it all fairly well. He doesn't believe me about the heart surgery -- he said, "it already did get fixed.... when I was a baby!" I said they would need to fix it again sometime and he said, "No! They already DID, Mommy!" ?

This is my big fear with Katie this time, too. I can already hear that little imp saying, "But that's what you told me last time!" Last year's surgery is still pretty fresh in her mind and she remembers some things about it that absolutely astound me, so I think this is going to be a tougher "sale" this go round. She remembers that she didn't feel good after surgery, and it took a full two months this time before she actually started acting like the same old Katie we know and love - more due to the cath assault on her groin and that partially deflated lung.............well, the back pain, too.

It sounds like Evan is taking it pretty well, though, for the most part. I'm grateful that you have Ben. We had a small gathering when Cort (knightfan) was in town this past fall and Katie got to meet Niki, Marsha, Suzy, and, of course, Cort, which I think helped. She got to meet some other people who had all had heart surgery just like her; somehow, though, she is convinced that they are all our cousins now. Hey, they are family in a way.

As for us, yes, we are waiting to hear back from Dr. Bove. Usually, I would have e-mailed him by now as it has been about three weeks or so, but I just haven't had the desire to do so............and now, especially with Bethany. I just don't want to even know the date - that makes it all too real. WE will be having the extracardiac fontan and the valve replacement, too. I have to admit that it scares the hell out of me! So I continue to live in denial for now, but I suspect that surgery will be sometime in April - one year from our last OHS..................UGH!

Well, I had better scoot, but please keep me posted on the cath. Sending love and hugs. Janet

 

[Turkey Hunter]

Ben also gave Evan a hat (which he tried to sleep in last night and still has on now -- he has other hats, but this one is "special"). So he really feels a connection with Ben. He even told me that the words on it say, "I will be your friend forever.... love, Ben" (which isn't true, but I'm glad he thinks so).

Katie,

You tell Evan that what he see's in the writing on that hat is exactly what it says !!

I also feel quite the connection with your son.....he has open my eyes in numerous ways. You have a wonderful family...and you and Dave are doing a great job !!

I'll go back to what I said a few days ago, Evan will ahndle this in ways that are hard for any of us to imagine. He is an extreamly amazing boy.

(....and I caught him looking me in the eyes.......) hehehe

God Bless and see you guys in a few weeks.

Ben

 

[LuvMyEvan]

....As for us, yes, we are waiting to hear back from Dr. Bove. Usually, I would have e-mailed him by now as it has been about three weeks or so, but I just haven't had the desire to do so............and now, especially with Bethany. I just don't want to even know the date - that makes it all too real. WE will be having the extracardiac fontan and the valve replacement, too. I have to admit that it scares the hell out of me! So I continue to live in denial for now, but I suspect that surgery will be sometime in April - one year from our last OHS..................UGH!

Well, I had better scoot, but please keep me posted on the cath. Sending love and hugs. Janet

Thanks so much for your thoughts, Janet. Tomorrow is the cath. I am *SO* not ready! I'm feeling very nervous and sick. I have to go to work today but we got a 2 hr. delay for icy roads (which are still just as icy now but we didn't close -- go figure). David is going to come home and stay with the kids so they don't have to be out today (otherwise they'd go to the sitter's).

I really feel ill as tomorrow is the first real day of heading back into all of this. After the loss of Baby Ben and then Bethany just a week later.... Needless to say I'm petrified. We were really enjoying the 'normalcy' that had set in over the past few years. We really feel blessed to have had that so it's hard to fathom that tomorrow that life we haven't lived in a while (hospitals, procedures, surgery, etc.) is going to be our life again.

I'm not sure if Evan will be staying the night after the cath. or not. We talked to them yesterday and his PC said to pack a bag and plan to stay but if it's possible he'll get us out of there around 8 or 9pm tomorrow night. He isn't sure he likes the idea of us driving an hour home with him after the cath. at that hour (esp. with the roads like they are). So we won't know for sure until then. I'll try to update on Friday assuming all goes as planned.

Keep me posted on your li'l Katie.

*hugs* & love,
Katie