I'm an official basketcase now!!!!

[gijanet]

I know I have been quiet for some time now, but I have been in such a state of despair. It's so hard sometimes to come in here and read about people worrying about what their scars are going to look like (and I fully realize that this is a legitimate concern for some) when I am so frightened of what is looming over our own heads. We (meaning me! ) are in such a state of flux! We are scheduled for surgery July 12th at the University of Michigan with Dr. Bove. Katie will undergo the extracardiac fontan and a valve re-repair or mechanical replacement of her common AV valve (mitral and tricuspid are merged), with replacement probable.

I don't think I even told you guys, but I e-mailed Katie's surgeon a while back to find out how many valve replacements he has performed in conjunction with the fontan procedure. His response was TWO - as in dos! Well, you can imagine what a warm, fuzzy feeling this gave me! NOT! This guy is one of the absolute best pediatric heart surgeons in the country and has been in practice for twenty five years and he has only done two???? So, I have done some checking and no one has performed more than this.........most none at all.

So, we decided to seek out a second opinion from Dr. Mee in Cleveland. That was five weeks ago. Today, we got his response via e-mail (because we asked him to do this as opposed to waiting for an official letter). It virtually echoed Dr. Bove. He did confirm that Katie has very complex anatomy! (Thank you very much. I think I know that by now!) He said that if Dr. Bove had opted not to do a biventricular repair on the table and deferred to the backup plan of the glenn, then it was highly unlikely that it was feasible. AS for the current situation, he would, however, prefer a valve annuloplasty if at all possible as opposed to a mechanical valve because of Katie's age (4). Ditto! That is what we would like, too, but that has already been attempted last year by Dr. Bove, and it didn't work. He also said that something needs to be done now before ventricular function declines...........again, echoing Dr. Bove.

Based on the information that Dr. Mee has ( a TEE and cath performed prior to last year's repair in Michigan), it is impossible for him to tell whether he could attempt to repair her valve or not. So, now what do we do???? This is all I can think about, and I feel so helpless!

Do I try and get another TEE scheduled to see if that would help Dr. Mee decide whether he can attempt to repair her valve or not? And where? Cleveland is thirteen hundred miles away! And Katie isn't supposed to fly! Do I ask him if he is better than Dr. Bove at repairing valves? Yeah, right! I dunno. My gut tells me a TEE won't even help him...............I'm sure it is going to be an "on the table" decision. And in that case, nothing will help..........except guidance from above.................which I have not received yet! DO YOU HEAR THAT, GOD????? I HAVE BEEN PRAYING FOR THAT FOR QUITE SOME TIME NOW!!!!

I know that a mechanical valve is not the end of the world - and I know many here would agree - but if I can possibly avoid putting a four year old on coumadin, I would really like to go that route. However, since this will be Katie's fourth open heart surgery, I don't see how we could put in a tissue one knowing that it will have a very short life span. I don't even know if Dr. Bove would do that! I haven't asked. His ethics might not allow him to do that, knowing it would have a short life span...............I dunno!! I am currently talking to a mom whose kid has had the fontan procedure a couple of years ago. He just had his mitral valve replaced with a 23 mm carbomedics at UOFM on the 6th of June. He is doing well, but they are still in the hospital because they are having hell trying to get his coumadin regulated...............

Well, thanks for letting me voice my fears out loud. I don't know what I honestly expect y'all to do, except maybe come up with something I might be obviously overlooking because I'm not thinking straight anymore............

Other than that, life is good!!! We are at the beach right now........the Bolivar Peninsula down by Galveston............trying to take our minds off of the impending.........but, of course, it is not working. I keep trying to squash that feeling of "Is this going to be our last vacation as a whole family?" I know that is stupid, but I can't help it............it's just there. I know deep in my heart that Katie is going to survive this surgery, but I also know that that mechanical valve implantation is going to change our lives forever...............sigh!

Katie is doing incredibly well. She is a constant hoot and keeps me in stitches. She has been running around the beach house........including the deck............completely naked. She comes streaking through, screaming, "I'm goin' nekky butt." Then tonight she comes in and wants a cup, so I gave her one. No, she wants a BIG cup. The next thing I know she is trying to pee in it!!! I almost rolled on the floor. Trying to keep a straight face, I put a quick halt to that one!!! I told her ladies didn't pee in cups, except at the doctor's office..............and very crowded ballgames........Geez! Dunno where she comes up with this stuff!

Well, thanks again for letting me whine................

 

[Ross]

Sometimes in life, you just gotta say Hey. Boy wasn't that alot of wisdom?

I'm glad to know you talked with Dr. Mee. Best thing I can think of is to just out right ask him if you should get another TEE and get it to him as soon as possible. Roger can work some real wonders, some say miracles, so what do you have to lose by asking? I know it's late in the game, but I feel it's worth a shot, if for nothing more then to help ease the burden going on in your mind right now.

 

[Mary]

Janet,
I can't add anything to what Ross has just said.
You know you all are always in my prayers.
I'm sitting here, crying my eyes out, thinking about your situation,
so I guess I'm an Official Basket Case too.

Nothing wrong with that.
Maybe we will start a club.

We'll call ourselvelves, Katies's Handwringers
She will laugh at us when she's grown.


Love to you all.
Mary

 

[perkicar]

Dr Mee

Dr Mee

Ditto on Ross and Mary's take on the situation. Can you get a TEE done locally and send him the tape? I know that sounds so simplistic, but if it's possible and it eases your fears--and boosts your confidence, then it's worth a try.
I'll keep you and your sweet girl in my prayers--and tell her there's plenty of time to pee in cups when she she grows up LOL.

 

[MichyB]

For what you go through ... I just want to send hugs your way. I can't offer much in the way of medical information. I think that you are a really great mom.

 

[TjCarpenter]

Thoughts and prayers...

Thoughts and prayers...

I know I have been quiet for some time now, but I have been is such a state of despair. It's so hard sometimes to come in here and read about people worrying about what their scars are going to look like (and I fully realize that this is a legitimate concern for some) when I am so frightened of what is looming over our own heads. We (meaning me! ) are in such a state of flux! We are scheduled for surgery July 12th at the University of Michigan with Dr. Bove. Katie will undergo the extracardiac fontan and a valve re-repair or mechanical replacement of her common AV valve (mitral and tricuspid are merged), with replacement probable.

I don't think I even told you guys, but I e-mailed Katie's surgeon a while back to find out how many valve replacements he has performed in conjunction with the fontan procedure. His response was TWO - as in dos! Well, you can imagine what a warm, fuzzy feeling this gave me! NOT! This guy is one of the absolute best pediatric heart surgeons in the country and has been in practice for twenty five years and he has only done two???? So, I have done some checking and no one has performed more than this.........most none at all.

So, we decided to seek out a second opinion from Dr. Mee in Cleveland. That was five weeks ago. Today, we got his response via e-mail (because we asked him to do this as opposed to waiting for an official letter). It virtually echoed Dr. Bove. He did confirm that Katie has very complex anatomy! (Thank you very much. I think I know that by now!) He said that if Dr. Bove had opted not to do a biventricular repair on the table and deferred to the backup plan of the glenn, then it was highly unlikely that it was feasible. AS for the current situation, he would, however, prefer a valve annuloplasty if at all possible as opposed to a mechanical valve because of Katie's age (4). Ditto! That is what we would like, too, but that has already been attempted last year by Dr. Bove, and it didn't work. He also said that something needs to be done now before ventricular function declines...........again, echoing Dr. Bove.

Based on the information that Dr. Mee has ( a TEE and cath performed prior to last year's repair in Michigan), it is impossible for him to tell whether he could attempt to repair her valve or not. So, now what do we do???? This is all I can think about, and I feel so helpless!

Do I try and get another TEE scheduled to see if that would help Dr. Mee decide whether he can attempt to repair her valve or not? And where? Cleveland is thirteen hundred miles away! And Katie isn't supposed to fly! Do I ask him if he is better than Dr. Bove at repairing valves? Yeah, right! I dunno. My gut tells me a TEE won't even help him...............I'm sure it is going to be an "on the table" decision. And in that case, nothing will help..........except guidance from above.................which I have not received yet! DO YOU HEAR THAT, GOD????? I HAVE BEEN PRAYING FOR THAT FOR QUITE SOME TIME NOW!!!!

I know that a mechanical valve is not the end of the world - and I know many here would agree - but if I can possibly avoid putting a four year old on coumadin, I would really like to go that route. However, since this will be Katie's fourth open heart surgery, I don't see how we could put in a tissue one knowing that it will have a very short life span. I don't even know if Dr. Bove would do that! I haven't asked. His ethics might not allow him to do that, knowing it would have a short life span...............I dunno!! I am currently talking to a mom whose kid has had the fontan procedure a couple of years ago. He just had his mitral valve replaced with a 23 mm carbomedics at UOFM on the 6th of June. He is doing well, but they are still in the hospital because they are having hell trying to get his coumadin regulated...............

Well, thanks for letting me voice my fears out loud. I don't know what I honestly expect y'all to do, except maybe come up with something I might be obviously overlooking because I'm not thinking straight anymore............

Other than that, life is good!!! We are at the beach right now........the Bolivar Peninsula down by Galveston............trying to take our minds off of the impending.........but, of course, it is not working. I keep trying to squash that feeling of "Is this going to be our last vacation as a whole family?" I know that is stupid, but I can't help it............it's just there. I know deep in my heart that Katie is going to survive this surgery, but I also know that that mechanical valve implantation is going to change our lives forever...............sigh!

Katie is doing incredibly well. She is a constant hoot and keeps me in stitches. She has been running around the beach house........including the deck............completely naked. She comes streaking through, screaming, "I'm goin' nekky butt." Then tonight she comes in and wants a cup, so I gave her one. No, she wants a BIG cup. The next thing I know she is trying to pee in it!!! I almost rolled on the floor. Trying to keep a straight face, I put a quick halt to that one!!! I told her ladies didn't pee in cups, except at the doctor's office..............and very crowded ballgames........Geez! Dunno where she comes up with this stuff!

Well, thanks again for letting me whine................

You are no whiner... I think you are very brave and that Katie is lucky to have such a Mommy! I am 45 now and living in Michigan with a lovely wife and two of my own. But... long ago, in New Jersey there was a man ( my Dad ) that was facing similar feelings as yours ( althought the medical condition was different ). When I was Katie's age back in the early sixties, my dad was told I had a very serious heart condition and that I would need open heart surgery. There were not as many options as we have now... My dad was strong for me, that way you are being strong for Katie and I will forever love him for it, the way I'm sure Katie will feel when she is old and gray.

Keep your faith! Remeber "Job" from the bible? It is hard on you now... I can't even imagine how hard. I have faith in you because I can see how much you love you daughter and I feel confident that all will be well for your family.

Keep your prayers going... It's strong medicine for what your whole family needs. For what it's worth, I am having my surgery Monday... Before I go in, I will not pray for me, I am going to save my prayers for Katie. Maybe that one more voice going to heaven will help.

Breathe! Be strong... I know you can do it.

I'll be thinking about you all... If you have time, let me know how things are going.

Regards,

Tom

 

[Phyllis]

I can only echo what all the others have said- you are a great Mom and I know that your strength and faith along with all the prayers of your friends here at VR will pull you and Katie through this. We hope we are still around to see Katie posting to this board one day and supporting other children with her history. If she's anything like her Mom, she will be a great addition to the forum.

 

[Nan]

Janet, you are not whining! You are venting! And you need to vent! How very difficult for you. It's bad enough when it is one's self that one worries about, but so much more difficult when it is your child.

Good for you for getting an opinion from Dr. Mee. And I agree with the others. Ask him about the TEE and also ask him outright if it were his daughter, what would he do and who would he recommend to do the surgery.

Will be thinking about you and Katie. It is a blessing that she doesn't understand all of this and can run around enjoying being "nekky butt".

 

[Nancy]

This is a terrible situation. Sometimes there are just not many options available, and some conditions don't fit the norm. My guess is that there are very few excellent surgeons who have vast experience with what Katie needs to have done.

Please keep in mind that NO ONE has told you it cannot be taken care of, just that it's complicated. This can work in favor of the patient because if ever a surgeon would have to prepare carefully for what he has to do, this would be the time. I feel that every "t" will be crossed and every "i" will be dotted "before" Katie goes into surgery, no matter who does it.

I agree with what Ross has said. But traveling distances can have an impact on decisions.

Is there anyone at the Texas Heart Institute who could offer a third opinion?

 

[Karlynn]

Janet,
I can only echo the others' suggestion that you see about getting another TEE and sending it to Dr. Mee. Other than that, the only thing I can offer is my support and many many prayers.

 

[PJmomrunner]

Janet,

Your post sounds like the airing of some very legitimate concerns about an extremely complex set of realities. You haven't come close to whining!

I can't add much, but it occurs to me that since we often hear that the actual condition of the patient's anatomy upon operating was not exactly as expected prior to surgery, the surgeon who has actually seen your daughter's anatomy has an advantage when re-operating. Is there a videotape of katie's last operation? If so, perhaps you could get a copy to Dr. Mee?

All the best to Katie and her family.

P. J.

 

[Gnusgal]

I don't have much to add, but I want you to know I'm here for you and praying for you. If you weren't off in Galviston I'd offer to get together for lunch and let you vent all you want. Heck, my mom is coming up tomorrow and you and she could swap stories! Though I don't think she ever had as difficult a decision to make as the one you're facing now. There just wasn't much to be done for me when I was Katie's age... Now I'm stuck with all the hard decisions. Lucky me.

Anyway, if you need me, you have my number (unless you lost it again. If you did, let me know and I'll send it again.). We'll be in Florida July 2-9, but all the rest of the summer we'll be home.

 

[Glenda]

Janet, you are by no means whining. You have every right to be concerned about your precious little angel. You and Katie will be at the top of my prayrs list and remember God's arms are wrapped around you and your family. He is still in control

 

[perrybucsdad]

Janet,

I know you feel desperate, just as I do with the difficult situation that my son Nicholas is going through right now. But you know something, there is someone else out there who's situation is worse, much worse. Just be thankful that what Katie has is fixable. I wouldn't want to be in your shoes, but I would rather be there than be the parent being told that my child only has three months to live because she has cancer or something worse than that.

You may think God has abondoned you, but he has not. You may feel that he is making you walk this road by yourself, but he is not. For as it is written in the poem "Footsteps", he is carrying you right now. He is there, you just need to relax and know he has things under control. He has chosen you because you are strong, just like he chose Job in the Bible.

I know it's tough not to worry, but worry is not of God. Do the flowers worry? No, they don't. They why should you worry, you are far more beautiful than the flowers, and every year, they bloom, and get rain and food the same as all of God creatures. He too will take care of you. If you listen very quietly, I bet you will even hear him say very quietly, "I'm here Janet..."


God Bless, and peace be with you....

- John

 

[jax3172]

You are wonderful mom!

You are wonderful mom!

I am the least knowledgeable of all the great people on this forum. However, I felt compelled to respond just to say that my thoughts and prayers are with you. It makes some of our own heart problems seem small. Your incredible love and concern for your little girl comes through loud and clear. It is a tribute to you.

 

[Creed3]

Janet,
I totally agree with what everyone else has said. Contacting Dr. Mee is exactly what I would have done as well. You want and should have the very best for Katie.
As for whining. No way are you whining. You just vent here whenever you need to. What you are going through is unimagineable for me. I can only relate slightly because my one daughter was born with a congenital heart defect. Nothing like what Katie is going through. Before I found out the extent of the defect I was a basketcase. It would be much easier for us as parents to be going through the heart problems for ourselves rather than our children. You are just protecting your baby. You are an excellent mother and I admire you. My thoughts and prayers are with you, Katie and your entire family. God has not left you. He is there guiding you whether you realize it or not. The strength you and your family have shown so far is proof of that. I will pray for you all daily. Please let us know what you decide and how things progress.

Gail

 

[inlaguna]

Janet

As with the others my thoughts and prayers are with you. I can't imagine the weight you feel on your shoulders now, but keep your faith. Seems like the biggest tests in this life come to those that can most handle them.

Dan

 

[catwoman]

Janet:
You're not whining -- you're just concerned!
Nancy has a good suggestion, getting a 3rd opinion down at the Texas Heart Institute in Houston. Have you contacted anyone there?

Envy you being in Galveston! Port Bolivar brings back memories.
In November 1990, I took 2 cats to a show in Lafayette LA. Had some vacation days, so I went to Dallas first, picked up my mom and we headed down I-35 south to outlet stores in New Braunfels. (At that time San Marcos didn't have many outlets.) Next day we went east on I-10 to I-45 then to Galveston. Spent the night and took the ferry from Galveston to Port Bolivar. Had a great time. The weather was very nice, so we carried the cats in their carriers down to the beach in Galveston and let them paw at the sand through the doors of their carriers. They enjoyed the ferry ride, too -- lots of seagulls to taunt them.
Would like to go back. If I do, I'll ask if anyone saw a little girl running around "nekky butt."

 

[Emma]

Oh Janet, I had tears in my eyes for you as I read your update. It echos all our experiences with Chloe too - especially with the valve repair/replacement issue. You know my opinion on it - I would go replacement as a mum of a child who has been on it from 18 months. Yes, its a pain sometimes but its nothing compared to going through another OH surgery if the valve repair goes like Chloe's did and fails after just a few months (and that was after 2 repairs on it). But that is only my opinion and I can fully understand your reasons for wanting to keep Katie off it if possible.
I wish you could meet Chloe, and Katie and her could meet up too. Can you imagine the chaos they'd cause together?! lol
Chloe is just so lively and energetic - even more so than her friends if possible. Maybe she could put your mind at rest. Since that isnt going to possible for a while at least (unless you fancy Florida in August?!) you'll have to take my word for it - AGAIN! lol - that warfarin is so not the monster it's made out to be and I'm sure Katie will be fine on it.
Also, the difference in our children after these replacements is just amazing and almost instant - energy/appetite etc - it all improves 110%!!

I know you are also thinking about Bethy but you have to remember she was really quite ill before her surgery and she was just too complicated - even more so than Katie. Also, her surgeon had NEVER done the extra-cardiac fontan before whereas Katie's has.
I can soooo see why it would stress you as her mummy but I still don't undestand why the op would be more complicated due to the valve replacement as I know once Chloe was in surgery and they were looking at the heart the actual replacement was, to quote her surgeon, 'the fairly straightforward bit'. Surely, if they are looking at her heart anyway - the valve replacement is just another bit of the op to do, rather than an added complication??

I know I'm repeating what we've talked about already but I am just trying to offer a teeny bit of reassurance that Katie will be fine and will amaze all these doctors with her speedy recovery!
She sounds so sweet and full of a gorgeous personality and Chloe and I can't wait to meet up with you all one day!

I'm here if you need me - can give you a ring too if you think it could help at all?

Thinking of you loads!!
Love Emma
xxx

 

[geebee]

Honey - whine, vent, yell, cry away. We will be here to listen if we can't help any more than that.

I am one who is convinced that numbers don't always mean quality of care. If Katie's surgery is so rare, you are lucky to have a surgeon who has done 2. He probably has much more experience than the majority of pediatric surgeons out there. In addition, it means this is not a routine surgery for him. That means he will take much more care than with something he does all the time.

I chose to have my last OHS at a smaller hospital in Cincinnati than going to the "hospital of choice" in the city. I spoke with nurses, doctors and others to learn that the smaller hospital had better stats and I am convinced it is because they are the Avis of cardiac care in the area (read - "we try harder"). I had wonderful care and would make that choice again if needed.

Katie will do fine because she is a survivor with a terrific mom and family to support her. Try to take comfort from those facts and know we are with you, too.