17 days and counting!

[doubletroublex2]

Well, lets just say mom is tired! Everyone is sick and we have only 17 days to get healthy. Why is it when someone you know asks what kind of surgery Caleb is having, and you say Mitral valve replacement. Their come back is "Oh, it's only a valve replacement." If one more person says that to me, I can't understand! Have they ever had one how about their child? I can almost bet their child hasn't seen the inside of a hospital since birth! Anyway I'm done venting...

Now, How long is this surgery suppose to take? How long was yours? Our first two were long and a lot of different things done 7 hrs for the first (holes patched, tricuspid and mitral repair). Second was 9 hours mitral repair and sub-aortic membrane removal. Now this one will involve sub-aortic membrane removal and Mitral replacement.

Also Emma I read your story and it was very intresting. Our children have somewhat the same defect Caleb didn't have a complete AV canal just a partial he did not have a common valve. I'm happy to hear that she has had such success with her valve replacement. I have told Caleb all about her. He really likes to know that he is not the only child that has the "same" heart defect as he does and is only one year older. Do they suspect that she will need anymore surgeries? My family has a hard time realizing that this may not be the last of Caleb's surgeries.

Also Janet I have read you story yes the whole thing, all of it. All I have to say is hug that little girl she is amazing. All that she went through, I would have given in long before leaving the hospital. The fontan surgery must be very hard on kids, it seems like the stay is extended on a lot of kids, and the out come isn't always good. I really feel for those parents. How hard it must be to send them in knowing how risky it is. Also all of medical errors you caught reminded me that I have to watch for this. One time that I really remember is when they almost doubled up on a dose of digoxin. At that it was only his second day on it and he was only 3 months old. I was later told that he could (would) have arrested if he had gotten that second dose.

Thanks for all the wonderful sucess stories, these help me stay positive.

Jamie

 

[Kathleen]

Best of luck

Best of luck

Jamie
Sending very postiive thoughts your way for Caleb. Where will he be having his surgery. I live in MN also and the doctors and hospitals here are wonderful so he is in good hands. I will be watching for positive news after his surgery.
Kathleen

 

[Phyllis]

Dear Jamie,
I have taken the liberty of posting Caleb's surgery on the calendar for May 17th. My heart goes out to you all and I will be praying for an easy, successful surgery and a complete and uneventful recovery. The Moms on this forum can probably help you more with the length of surgery etc., but please keep us posted and know that we are always here for you.
Best Wishes,
Phyllis

 

[Mary]

Jamie,
You and Caleb both will be in my prayers as you wait for his latest surgery date. Please keep posting and sharing your feelings.
Hugs,
Mary

 

[Lynlw]

Hi Jamie, my son just turned 18. I was wonderring if you belong to any groups like this for CHd families. I didn't find any until Justin was 10 or so (heck no computers beofore then lol) and it was so good to find others who "get it' and know what it feels like to hand your baby (even when they are 17 his last surgery was a year ago tomorrow ) over for heart surgery, i wouldn't wish it on my worst enemy. I was wonderring have you set up a page for Caleb? If not I really recomend one, it makes it so much easier to update everyone and it's great to read all the message. Where will you be going for surgery? If I can answer any questions (except coumaden , Justin isn't on any meds) I'll keep you in my prayers, Lyn www.caringbridge.org/nj/justinw

 

[Mb]

Dear Jaime:

If I were in your shoes, I would probably respond with the following:

"Actually, only 10% of all heart surgeries in this country are valve replacements. The other 90% are by-passes. In fact, mitral valve replacements are one of the very few heart surgeries, where the Dr. has to actually go inside the heart. And, as you can imagine most of the mitral valve surgeries are done on adults. That is not the case with my son who is a child."

Grrr.....the nerve of some people.

Best wishes your way.

Marybeth

 

[Lynlw]

ps I wanted to say I know how frustrating other's can be, i always love the,"I know how you feel, my son had tubes put in his ears" it's hard but don't let them cause more stress, just blow it off or give mary's suggestion , altho many still won't get it, Lyn

 

[doubletroublex2]

Thank you for all of the suggestions and prayers I really need them. Our surgery will be at the U of MN Dr. Folker is the surgeon. I have not set up a Carepage for Caleb yet CaringBridge is the sit that the University uses, but they are all the same.

Jamie

PS Please pray for my brother-in-law as he just found out he has a tumor (thought to be no cancerous) on his pituitary gland and will be having sugery within the next three weeks.

 

[gijanet]

((((hugs))))

((((hugs))))

Well, lets just say mom is tired! Everyone is sick and we have only 17 days to get healthy. Why is it when someone you know asks what kind of surgery Caleb is having, and you say Mitral valve replacement. Their come back is "Oh, it's only a valve replacement." If one more person says that to me, I can't understand! Have they ever had one how about their child? I can almost bet their child hasn't seen the inside of a hospital since birth! Anyway I'm done venting...

and probably getting close to that nervous breakdown stage............sigh! It's Murphy's law at work..................seems like kids who are never sick always get sick right before their surgeries.............just make sure that Caleb is well before his surgery or you might need to postpone. Before Katie's third surgery, she was on antibiotics right up until two days before surgery. She wasn't running a fever, so they thought it was okay. Still, that was the surgery with the repair that didn't hold up, so sometimes, like I don't have enough things already to drive me nuts, I lie around and wonder if that didn't have anything to do with it.........deep down, I know it didn't, but you always question when things don't go according to plan............anyway, just please make sure that Caleb is fully well before surgery..........if you have any questions, clear it with the surgeon. AS far as the others, yep, I've just had to bite my tongue when I get a "Oh, I know just what you are going through. My Steven had his tonsils out last year............." Oh, yeah, that certainly compares to multiple open heart surgeries.............NOT!!! Or the, "Well, she's all fixed, isn't she?" GRRRR!!!! I just try to remember that they are among the blissfully ignorant............and try hard not to wish them illwill............. (as I try to hide my stash of voodoo dolls...........heehee!)

Now, How long is this surgery suppose to take? How long was yours? Our first two were long and a lot of different things done 7 hrs for the first (holes patched, tricuspid and mitral repair). Second was 9 hours mitral repair and sub-aortic membrane removal. Now this one will involve sub-aortic membrane removal and Mitral replacement.

Now, honey,nobody's going to be able to answer that one. Your surgeon might be able to take a stab (not literally, I hope! ) at that one. It is really going to depend on how much scar tissue Caleb has developed and how long it takes to get through all of that. Since it has been three years since Caleb's last surgery, he will have amassed some, but just how much will be the question. Pediatric cardiothoracic surgeons excel in this area, though, since most of our kids, unfortunately, are subject to multiple surgeries. I would guesstimate four to five hours from start to finish, but that is purely a guess, based on the vr being the only procedure this time. Katie's last one was about 9 & 1/2, but that was with the fontan and valve repair, then the reopen and replacement. For what it's worth, our surgeon told us replacements are faster than repairs.

Also Janet I have read you story yes the whole thing, all of it. All I have to say is hug that little girl she is amazing. All that she went through, I would have given in long before leaving the hospital. The fontan surgery must be very hard on kids, it seems like the stay is extended on a lot of kids, and the out come isn't always good. I really feel for those parents. How hard it must be to send them in knowing how risky it is. Also all of medical errors you caught reminded me that I have to watch for this. One time that I really remember is when they almost doubled up on a dose of digoxin. At that it was only his second day on it and he was only 3 months old. I was later told that he could (would) have arrested if he had gotten that second dose.

Thanks for all the wonderful sucess stories, these help me stay positive.
Jamie

Boy, you really have been bored, haven't you? Just kidding. Thanks so much for reading her saga and thanks for the empathy. She is a pretty amazing kid, isn't she? She's gonna have to be as she is putting me in an early grave............sigh! Don't be too frightened about mistakes, but do be on the lookout.............and yeah, a double dose of dig wouldn't have been too good for anyone, but especially at three months old. I am so glad you caught that.

Well, please keep us posted and feel free to scream, rant, cry, whatever..............I know I did all of the above last year. We truly will keep you and Caleb in our hearts and prayers. Much love. Janet

 

[gijanet]

Sorry, just saw this............

Sorry, just saw this............

Thank you for all of the suggestions and prayers I really need them. Our surgery will be at the U of MN Dr. Folker is the surgeon. I have not set up a Carepage for Caleb yet CaringBridge is the sit that the University uses, but they are all the same.

Jamie

PS Please pray for my brother-in-law as he just found out he has a tumor (thought to be no cancerous) on his pituitary gland and will be having sugery within the next three weeks.

Yes, a carepage (or caringbridge) is a Godsend. I'm sure you remember, but it is really hard to make phone calls, etc., when you are spending all of your time in the PCTU or PICU. If you have computer access, which is the biggest challenge at UofM right now, you can update anytime of the day or night. since many of my posts were at three AM, that worked out well for us.

We will most definitely add your brother to our prayers, too. Many hugs. Janet

 

[gijanet]

Okay, one last post tonight...........

Okay, one last post tonight...........

but are they going to do a cath or a TEE prior to Caleb's surgery? I would still question the tricuspid valve regurgitation and have them doublecheck that. Y'all seriously do not want to have another OHS here anytime in the near future. Much love. J.

 

[doubletroublex2]

I have asked about the tricuspid valve and from the last few echo reports that the nurse had there was no mention of it. I also asked about a TEE or cath (he has never had one before surgery, just TEE's before leaving the OR). That will be decided the friday before surgery in confrence (meeting of the minds as I call it). After reading a few other treads it really got me thinking what if they open him up and say oops it wasn't as bad as we thought. I did state this to the Cardoi NP and she assured me that this needed to be done. She said that with Caleb he is so thin that the echo's have always been very accurate, it is usually adults that they feel the need to double check these things. I really hope that this will all be true.

Jamie

 

[JeanneImp]

Well, lets just say mom is tired! Everyone is sick and we have only 17 days to get healthy. Why is it when someone you know asks what kind of surgery Caleb is having, and you say Mitral valve replacement. Their come back is "Oh, it's only a valve replacement." If one more person says that to me, I can't understand! Have they ever had one how about their child? I can almost bet their child hasn't seen the inside of a hospital since birth! Anyway I'm done venting...

Now, How long is this surgery suppose to take? How long was yours? Our first two were long and a lot of different things done 7 hrs for the first (holes patched, tricuspid and mitral repair). Second was 9 hours mitral repair and sub-aortic membrane removal. Now this one will involve sub-aortic membrane removal and Mitral replacement.

Hi Jamie,
Is Caleb having the Ross-Konna? Or a mech. valve replacement?? Matt had several mitral repairs and twice he had his membrane removed (plus other surgeries), before his mitral valve was replaced with a St. Judes. Six months later we were in Michigan for a Konna (Left ventricular outflow tract obstruction) and his sub aortic membrane was removed and his aortic valve was replaced with another St. Jude.

He has had his mechanical valves for 10 yrs now. Was doing pretty good until recently. Now he needs to have a cath in June to see what is going on...

If I can be of help please let me know!

 

[doubletroublex2]

He is having a mechanical valve replacement.

Jamie

 

[Marguerite53]

I just want to chime in here, say hello! wish you the very VERY best for Caleb and tell you that he will be in my thoughts all day on the 18th and beyond....until we know he is safe.

Do not give uninformed and careless people a second thought, they do not deserve it! That is what makes this particular community of ours so rich. We are informed. Thank you for what you bring to us!

Best wishes!

Marguerite

 

[Janea]

I will be praying for your little Caleb! I just am so sad that little children have to go through surgeries like this! I hope that you will be able to find some peace of mind during the next couple weeks. The anticipation of surgery is truely awful, especially on your child. Sending positive thoughts and the best of wishes your way!!!! Please keep us posted as to his progress!

--Janea

 

[blessed1416]

Sending positive thoughts

Sending positive thoughts

and many, many prayers for you, your family and your precious child ( and the insensitive #*?!!'s who think OHS is a minor surgery). It seems that children are much stronger than we give them credit for. I have two teenagers now, one of which nearly died when she was only two weeks old. She seems to be healthy now, other than she also is experiencing some symptoms of mitral valve problems. It sure is easy to spoil a child when they have health problems isn't it? But, I think that it is fine to show them that little extra attention. Your Caleb sounds like a brave, strong, and special young man. I've added him to my prayer list and will asking for God to guide the surgeons hands. Let us know how he does.

 

[Paul117]

me too 12 days

me too 12 days

Jamie

I'll be thinking of all of you, espesially you. I've done this before so I know I'll be fine and switching to the post op site in 13 days.

See you there.

Paul117

 

[gijanet]

I love your new avatar!!

I love your new avatar!!

Your kids are adorable! Sorry I didn't post sooner, but I have been under the weather, too............grrr!

Anyway, glad to hear that about the tricuspid. We normally have a TEE before and sometimes after surgery, but that could just be our institution's preference. If you have any doubts, contact your surgeon, though, for peace of mind. I always have a sit-down with our surgeon prior to surgery.

Just in case you still want to try and get Matty's Heart, the ordering info is at http://www.zbchde.homestead.com/store.html It's on sale right now, too, at half price. If you call in the order, they can get it to you in two days. It would probably be good for Caleb's sister to read, too, with y'all so she can understand what Caleb is going through.

And don't forget those child life folks at your hospital. From our experience, they are wonderful.

Keeping you in our thoughts and prayers. Many hugs. J.

 

[doubletroublex2]

thanks!

thanks!

I know my kids are cute! (lol) You should see my two other ones! The picture that is on is Caleb and his twin sister Ashalyn (his second mother). Then I also have twin one year olds Noah and Elias.Yyes my hands are full!

I have started a care page for Caleb. Once it's all organized I will be putting it out for everyone to see. Also I do have Matty's heart book and we read it almost daily, I think that it has helped both of the kids. I also have a book I can't remember the name exactly but it's somthing like my brother needs an operation. Very nonspecific on the operation but it has a place for Ashalyn to right about her adventures while away from her brother and Mom and Dad. I have been in contact with the child life specialist at the hospital, they sent out a medical kit for the kids to play with, they love it paging Dr. Caleb!

Yesterday I brought him in because he is developing a cough. The GP said that he sounds very clear x-ray looks better than the one taken three weeks ago. So as far as they can tell the cough is due to the PH. Knock on wood that the surgeon will agree!

Jamie