I'm an official basketcase now!!!!

[Famulus]

I was with you and the others completely, and with everything they said - until I read your last paragraph...about how Katie is now.

(quote)He also said that something needs to be done now before ventricular function declines

I was told the same thing - 27 years ago. Mine has now declined - (my tests show "probable LVH") It was first noticed last year, about 6 months before I became symptomatic.

I hope I am not out of line in asking this, but is her function declining now? Is there not an option of waiting and watching?

 

[bvdr]

Janet, I just erased a long reply to you because I just didn't seem to be able to convey how deeply I feel for you guys....there just aren't the words for it. You are in my prayers and will be throughout. Sometimes we don't know the answers but I do know that God loves Katie.

 

[Guest]

*sighs*

Arg, Janet ... the only thing I can think to type is that I wish I were back in TX now ... to get the TX contingency together again to have a good "party" and "venting" session with all of ya. But, sadly, I can't do that, since I'm still looking for a job...lol.

BUT...I'm telling you and sending you and your family many thoughts/prayers.


Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72,6,9/'81,7.hobbies.chdQB = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html
"We got mountains to climb" ... Rod Stewart ... 'Broken Arrow'

 

[Abbanabba]

(((((HUGS)))))

Oh Janet - I can't imagine how hard this must be for you and it's only natural for your mind to run through every scenario. Just remember, kids are amazingly resiliant, and Katie sounds like she's got a lot of fire in her - just like her mum!

I don't really have any advice for you, but I'm sending bucket loads of positve throughts to you and Katie.

Anna : )

 

[gijanet]

God, where do I start??

God, where do I start??

Well, you guys have managed to turn me into a babbling idiot today. I've been crying like a baby just reading your posts. I am always so humbled by your compassionate responses to my periodic meltdowns. Some of you have been my staunchest allies since I was first initiated into this elite club, and some of you are new to Katie's fanclub. Regardless, you always manage to give me a renewed sense of hope and some inspiration, too.

I checked in earlier today, but didn't want to tie up the phone line (we're on a dialup here). See, I knew you guys would come up with something I was obviously overlooking. We left two messages with Dr. Mee's Girl Friday, Debbie, and e-mailed him, too, to see if he thinks a current TEE would help him at all in giving us a more definitive opinion about that valve. Part of my frustration lies in the fact that it is virtually impossible to talk to Mee himself. He's in a very protected cocoon. Everything, it seems, goes through Debbie or one of the cardiologists on staff. I swear it would be easier to talk to the President himself. I am used to having a free reign so to speak with some of the big name pediatric surgeons. When we sought out opinions before Katie's second surgery, Dr. Spray (CHOP) emailed me back personally, Dr. Jonas (Boston Children's at the time) emailed me back personally, Dr. Bove emailed me back personally, and Dr. Fraser (TX Children's) picked up the phone and personally called me. So, this not being able to get through to the surgeon himself is rather new to me and very disturbing. I am just going to be a squeaky wheel until I get some answers, I guess.

At least I have a course of action now, which keeps me from feeling so totally helpless. We will bombard Debbie with e-mails and phone calls until we get an answer. If Dr. Mee thinks that a new TEE will help, then we will go schedule one and send it. If he doesn't truly think it will help, welllllllllllllll...... I guess we will tackle that bridge when we get to it. We are not totally opposed to going to Cleveland and doing the TEE there and talking to Mee in person if that is going to help (which is what most of the parents who have gotten second opinions from him have resorted to doing - at least the ones I have conversed with)...............but that is a royal pain in the ass and a major expense if it is not going to help him form an opinion. If it is a well, I can't really make that call until I get her on the table type of thing, then I dunno............still looking for that guidance from above.............

Fam, we would love to wait, but with Katie's anatomy, her entire circulation is dependent on good ventricular function. I hope I am not insulting your intelligence, but with the fontan circulation, the blood is pumped to the body, circulates throughout the body, drains to the lungs and then back to the heart, where it is once again pumped out. Since the ventricles already have to work extra hard to circulate that blood throughout the body to the lungs to the heart in one fell swoop, you definitely don't want to jeopardize ventricular function. And the longer we wait to do the fontan, the more likely Katie will develop PAVMs (collaterals in her lungs) that will impair her lung capacity and function. There is an enzyme in the liver that prevents these collaterals from forming and with Katie's current circulation, the blood from her liver is going into her heart instead of the lungs where this enzyme is critical. So it is best that we get this done sooner as opposed to later..........

And, Emma, you know Bethy is constantly on my mind these days.......sigh!

I can't thank you guys enough. I really needed y'all today and you came through for me. Wish I had time to address you all individually as you mean that much to me, but my butt is dragging..........hey, I may actually get some sleep tonight. That would be a rare treat.

Just for a little comic relief as I so desperately need some..........

We had Katie down at the beach this afternoon. She was flying her Wiggles kite, but has not quite mastered the art yet. It would go soaring into the air, but every so often it would divebomb into the sand, so Don would have to get it going up in the air for her again. This went on for awhile, but then the kite divebombed behind a huge 6 foot mound of seaweed. Katie was tugging away at the string and getting very frustrated, but to no avail, so Don went to disentangle the kite from the seaweed. Katie kept incessantly yanking on the kite, which was making it very difficult for Don to free up............

Sooooooooo, I yelled to Katie, "Katie, Wait! Daddy has to get it up again! DADDY HAS TO GET IT UP AGAIN!" Wow! Did I turn about three shades of red when I turned around and realized that the entire beach population was staring at us wanting to know exactly what it was that Daddy was trying to get up again.................sheesh! Can we say humiliated?

My love and thanks to you all. Janet P.s. Yes, Cort, I would love another get together with you, Niki, and Marsha...................sigh! But first things first................bigger sigh!

 

[Ross]

Hon I wish I could say Dr. Mee is one that would take a call, but fact of the matter is, the man is on the move the entire time he's in the building. All of the surgeons at Cleveland are like that. I was very lucky and fortunate to have Dr. McCarthy take time out of his day to come up and see his miracle that he wanted to know about. That's something they just don't do. Harpoon may know of a better way to get ahold of him. Might check into that since Mee fixed him. Of course, that doesn't necessarily mean anything either, but I'm trying to think of avenues for you to try.

So daddy has to get it up again huh?

 

[Karlynn]

Janet, now I'm picturing a really funny Viagra commercial. The camera pans to the sky to see a kite (with the viagra logo) soaring in the blue, then pans back to you, with a big smile on your face... and people standing on the beach with their mouths gapping open.

I hope you will hear something soon. Please take care of yourself (the beach sounds like a great start) and don't wear yourself out in your effort to turn over each stone.

 

[Guest]

P.s. Yes, Cort, I would love another get together with you, Niki, and Marsha...................sigh! But first things first................bigger sigh!

Yes....first things first ... then, well, we'll see .


BTW...it's good that, despite all of your frustrations right now, you are still able to keep that sense of humor that we have all come to know'n'love 'round these parts ...

And, Karlynn ... perhaps you should get into marketing ... lol .

 

[Georgia]

Janet, just a quick note to let you know I'm thinking of you and praying for Katie. What a mess, and it never seems to go away.

Please be sure to take care of yourself, and to eat well and get plenty of rest. It's easy to put yourself last and get worn out, and then you can't help anyone.

Continue to vent, whine, scream and cry - we have really broad shoulders.

 

[KimC]

Janet,

I have a four-year-old, Samantha who had a rebellious moment and knocked-over a 25 lb. concrete statue on top of her head. I was having my lab work done for my cath when it happened and received an urgent call from my husband, telling me to meet him at the ER.

Thankfully, Samantha didn't require stitches and went home that day with a bandaged head and mild concussion. Our doctor instructed us to keep her awake for four hours as a precaution.

I left Sam watching Shrek with her uncle while I went upstairs. When I came back down, I found Samantha (and her uncle) asleep on the couch. Instinctively, I put my hand over her heart and the wound on her head. This is the child I almost miscarried, who had severe colitis as a nine-week-old and came close to bleeding to death ... no kidding. Where the hell where God?s angels when the statue fell over, I thought.

My seven-year-old, Jessica is a skeptic ? she asks ageold questions like, ?If God is good, why does He let bad things happen to good people?? (She asked this after 911 at age five). Samantha has the purest heart of my two daughters, and loves to say prayers for any creature in distress, including bugs and worms!

I had these kind of thoughts about Sam as she slept when I suddenly noticed something out of the corner of my eye: Lo and behold, a tall Great Blue Heron was standing on top of our wrought-iron railing leading downstairs to our backyard. He was looking straight at me, hovering over us.

We've NEVER seen a Great Blue so close to our house, mind you! He was only ten feet away from Samantha and did not move after seeing me. We stared at each other for almost 20 minutes, probably the longest 20 minutes of my life! I felt like God had given me a sign: He was watching over Samantha, hadn't forgotten her, and loves her, come what may.

Direction from above can come in unexpected ways, subtle nuances that reassure you of God's presence and good intentions. Clarity comes in quiet moments. In my experience, direction never comes too late, but rarely comes early enough to satisfy my fast pace.

Don't lose faith, Janet. Keep open to the nuances, and continue to pray for clarity and the peace that passes all understanding. I'll keep Katie close to my heart, in Samantha's prayers.

Much love,

 

[Debrinha GT]

Just think..

Just think..

Dear Janet, as you know I was an extreme case thirty years ago, and here I am, after three mitral valve replacements (all with tissue), and with another on its way. I understand that your brain's now playing tricks on you by getting you to compare wee Kathy's situation with that little girl's who passed away a few months ago. But bear in mind that everyone is different and I think you should get the surgery done with the doctor you've already arranged things with. Making any changes at this point will only get you even more anxious and comfused, and it would probably not make much difference. What I'm trying to say here is that she seems to be in good hands judging by what I've heard. We'll be here for you the whole time, and don't hesitate to come and vent any time you feel like it. God WILL be watching over her. Take care!
Débora

 

[cocoalab]

I feel for you Janet

I feel for you Janet

I just wanted to say I am so sorry that this decision has been so hard. I wanted to mention I had gotten both Dr. Bove and Dr. Mees' opinion about a surgery for Andrew about a year ago. We did not have to see them in person but boy did I have a hard time getting his records and cath tape sent out. As soon as they were, they both responded promptly. I had done this through Andrew's pc so she sent me a copy of their recomendations which in his case they both advised to not go that route for him. (It was about a double switch). they are both excellent surgeons in many complicated proceedures. I have heard many nice things about UOM more so than Clevland Clinic more from personal non medical issues. I would feel confident with either surgeon.

Did you say Dr. Bove has done previous surgeries on Katie? I would probably feel more comfortable with him redoing Andrew's if it were me. Now about the coumadin. Andrew has had a mechanical valve for almost 9 years. He received it pretty young too. He actually had very good pt/ INR results until he was around 15 I think. He has never had a major problem with it. It does make hospital tests more annoying but not a huge deal just longer if he has to come off the coumadin for a while.

Andrew plays baseball, basketball, has been on a young swim team, Diving boards, rides bike, plays FLAG football, ect... Yes he does have some restictions and he has to wear a helmet when he rides, all my kids do, he couldn't take horseback riding. It's is not horrible. And you may have a choice next time. As you know we are planning on putting a bovine valve in Wednesday. It may not turn out. I will be dissapointed, but not as disapointed as last time when the repair didn't work and he opted out of the pigs valve.

Mostly we want our kids to come through the surgery, and live normal lives. Whatever normal is. :-D I am praying for Katie and for you cause I know at least a tiny bit how you are probably feeling. Wish it were over, don't want to go through it. Is this the last time we will be all together doing this? I love the quote which I will mess up a bit I bet. "Worry is paying intrest on trouble that hasn't happened." We need to enjoy our today and trust God to get us through our tomorrows (and our today).

Hope this wasn't too long and I hope that you get your many questions answered by the surgeons. I remember when Andrew had his last surgery knowing that what ever happened God was in control of it. He had a plan for Andrew's life and for mine. i remember telling people that if God wanted him to make it nothing the surgens could do would mess that up and if that wasn't in His plan nothing they could do would keep him alive. And I prayed with all my heart that he would make it! I'll be praying.

heart hugs,
Wendy

 

[gijanet]

I guess I am obtuse............

I guess I am obtuse............

but I am more befuddled than ever............is this the sign I have been looking for?

We got an e-mail back from Dr. Mee's office (read that from Debbie, his bodyguard) in response to my questions about what he would need to offer a more definitive opinion about whether the valve can be repaired or not. The response, for the most part, said "since you already have a surgical date scheduled and our docs are in agreement with their assessment, Dr. Mee feels you should really be directing any further questions to the surgeon that will be doing the case." ARGHHHH!!! BAM! BAM! BAM! (Head against brick wall!)

I thought I made it very clear in my request for a second opinion that we would be willing to switch surgeons if Mee really thinks he can save that valve. Otherwise, we will stay put as we trust Dr. Bove and he already knows Katie's anatomy, having operated on her twice before. Do I push this? Don feels like we need to e-mail (we seem to have better luck with that than the phone) him back, stressing that we would be willing to switch if he can save Katie's valve, and what does he need to make that decision? ('Course it will be intercepted by Debbie).

I don't know anymore. Deborah, you may be right; maybe this is my sign that we are just to stay put and should go with the original game plan. I just don't know...............

Any thoughts?????

Thank you again everyone for putting up with me. Your support is so appreciated. Kim, I really appreciate your sharing your blue heron story. I have told God that I am pretty dense when looking for signs, so please make it obvious when he sends it.............

Hugs to all. I'll be looking for my blue heron......................Janet

 

[gijanet]

Wendy, thanks so much.........

Wendy, thanks so much.........

We must have been writing at the same time (what are you doing up so late - I'm usually the lone hoot owl!) I do appreciate your taking the time to help me through this, especially since you have Andrew's surgery looming so soon. These guys on here have truly helped me to realize that coumadin isn't as bad as others make it out to be, but Katie does want to ride a horse. She has done nothing but talk about horses for six months now and owns every My LIttle Pony that is out. I grew up with a horse and would love to have that for her, too. I know if we can't, it won't be the end of the world, but this kid has been through so much (and I know you know that firsthand), I just hate denying her one of life's simple pleasures. Well, I ramble.

I do appreciate you helping to ease my fears - you and
Emma both - and I think it will really help Don (who thinks that she is going to have to live in some bubble once she goes on coumadin) see that she can still be an active kid - just with some restrictions and precautions.

Yes, and Dr. Bove's having operated on her twice before does weigh very heavily in our decision.

Thank you so much again. You know you and Andrew will be in our prayers. Many hugs. Janet

I just wanted to say I am so sorry that this decision has been so hard. I wanted to mention I had gotten both Dr. Bove and Dr. Mees' opinion about a surgery for Andrew about a year ago. We did not have to see them in person but boy did I have a hard time getting his records and cath tape sent out. As soon as they were, they both responded promptly. I had done this through Andrew's pc so she sent me a copy of their recomendations which in his case they both advised to not go that route for him. (It was about a double switch). they are both excellent surgeons in many complicated proceedures. I have heard many nice things about UOM more so than Clevland Clinic more from personal non medical issues. I would feel confident with either surgeon.

Did you say Dr. Bove has done previous surgeries on Katie? I would probably feel more comfortable with him redoing Andrew's if it were me. Now about the coumadin. Andrew has had a mechanical valve for almost 9 years. He received it pretty young too. He actually had very good pt/ INR results until he was around 15 I think. He has never had a major problem with it. It does make hospital tests more annoying but not a huge deal just longer if he has to come off the coumadin for a while.

Andrew plays baseball, basketball, has been on a young swim team, Diving boards, rides bike, plays FLAG football, ect... Yes he does have some restictions and he has to wear a helmet when he rides, all my kids do, he couldn't take horseback riding. It's is not horrible. And you may have a choice next time. As you know we are planning on putting a bovine valve in Wednesday. It may not turn out. I will be dissapointed, but not as disapointed as last time when the repair didn't work and he opted out of the pigs valve.

Mostly we want our kids to come through the surgery, and live normal lives. Whatever normal is. :-D I am praying for Katie and for you cause I know at least a tiny bit how you are probably feeling. Wish it were over, don't want to go through it. Is this the last time we will be all together doing this? I love the quote which I will mess up a bit I bet. "Worry is paying intrest on trouble that hasn't happened." We need to enjoy our today and trust God to get us through our tomorrows (and our today).

Hope this wasn't too long and I hope that you get your many questions answered by the surgeons. I remember when Andrew had his last surgery knowing that what ever happened God was in control of it. He had a plan for Andrew's life and for mine. i remember telling people that if God wanted him to make it nothing the surgens could do would mess that up and if that wasn't in His plan nothing they could do would keep him alive. And I prayed with all my heart that he would make it! I'll be praying.

heart hugs,
Wendy

 

[cocoalab]

Night owl!

Night owl!

I couldn't sleep and my hubby had to get up in an hour and I didn't want to wake him.

My gut feeling is saying stay with Bove but the most important thing will be for you to feel that you are confident in your decision. What could one more email hurt? I think your husband worded it well.

Oh and the horsey thing. She may be able to ride even with the coumadin if she wears a helmet and you know her INR is in range that day, and you or a close friend own the horse. Andrew has ridden on pony rides and even a camel or two. Andrew also rides wild rollercoasters and loves them.

God bless and get some sleep!

heart hugs,
wendy

We must have been writing at the same time (what are you doing up so late - I'm usually the lone hoot owl!) I do appreciate your taking the time to help me through this, especially since you have Andrew's surgery looming so soon. These guys on here have truly helped me to realize that coumadin isn't as bad as others make it out to be, but Katie does want to ride a horse. She has done nothing but talk about horses for six months now and owns every My LIttle Pony that is out. I grew up with a horse and would love to have that for her, too. I know if we can't, it won't be the end of the world, but this kid has been through so much (and I know you know that firsthand), I just hate denying her one of life's simple pleasures. Well, I ramble.

I do appreciate you helping to ease my fears - you and
Emma both - and I think it will really help Don (who thinks that she is going to have to live in some bubble once she goes on coumadin) see that she can still be an active kid - just with some restrictions and precautions.

Yes, and Dr. Bove's having operated on her twice before does weigh very heavily in our decision.

Thank you so much again. You know you and Andrew will be in our prayers. Many hugs. Janet

 

[Gnusgal]

Oh and the horsey thing. She may be able to ride even with the coumadin if she wears a helmet and you know her INR is in range that day, and you or a close friend own the horse.

Horses can be dangerous (or not) regardless of coumadin. My dad's sister was an expert horsewoman and when out riding by herself one morning fell from the horse's back, hitting her head on a rock. By the time they found her, she was dead. She was not on any sort of anticoagulant.

Why am I telling you this? Because regardless of what happened to the aunt I never got to meet, I have still ridden horses. And have I ever thought for one moment that I wouldn't get on one because I am on coumadin? No. Now, I haven't since starting coumadin, but that's due to not having the opportunity, not because I'm afraid of anything happening.

Driving in a car can be just as dangerous. But you won't stop having her ride in one. So I really don't see why you would have to prevent Katie from ever riding a horse. Just make sure she wears a helmet and NEVER rides alone (no one should). If she does happen to fall, get treatment right away. But don't live your life worrying about the "what if"s. You'll waste a lot of time...

Just my take on the whole horse thing...

 

[gijanet]

Thank you again!

Thank you again!

Wendy and Niki.............I know I am being foolish............and I know once we are actually doing the coumadin thing, I will look back and realize what an idiot I'm being, but for now it's just one more thing driving me nuts. Niki, I am so sorry about your aunt. And Wendy, I will be thinking and praying for you and Andrew this week. Many hugs to you both........and everyone again for putting up with me. Janet