We have another date! AGAIN (Nov 21 update)

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sarahsunshine's picture
Joined: 11/29/06
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We have another date! AGAIN (Nov 21 update)

Nov 21: We managed to get Skyler to get a good night's sleep by not telling him about surgery yesterday, somehow giving him vit K to decrease his INR, waking him up at 6am for a big drink of juice, take another INR (2.2) which was way too high (was supposed to be under 1.5), called the blood clinic. They said to take him to emerge and they would deal with reversal there. Left at 6:45am with dad. I got the other two kids organized and was making plans for pick-up woth friends when I received a phonecall (8am): SURGERY CANCELLED FOR TODAY. My GOD. This is the worst yet. cancelled on 2hours notice, AFTER showing up to the hospital?

Scheduled back on Nov 28th...

Nov 20: Just got a phone call. Back to Nov 21.

Nov 17: Now we have Nov 28th...

Nov 14: Another new date. Now we have Nov 21st scheduled. This is getting old.

Surgery date likely Nov 16 (Wednesday).

Possibly Nov 14 (Monday) because of a "likely cancelation".

That makes it next week. Skyler's cough is TONS better, with a mild residual cough. The sooner the better so he doesn't get to worry about it as long. The waiting is the worst part.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

:bigarmhug:

I'll be keeping you all in my prayers. Does he know yet? What did he think of Leo's surgery?

gardenbug's picture
Joined: 03/12/07
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I worked on photo books for him tonight. He's the guardian of the family history. Biggrin

gardenbug's picture
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I ordered the books this morning.

sarahsunshine's picture
Joined: 11/29/06
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Well, we told him that he would be having surgery before Christmas. We haven’t told him exactly when. I do believe that it will be after Halloween when he will be told.

On Nov 4 he goes in for pre-surgery and tests. He will need to be told before that, obviously (or maybe not so obvious, I don’t know how his mom’s brain works. Maybe she’ll expect the hospital to tell him what he’s there for?).

Skyler was fine with Leo’s surgery, but very obviously not used to allowing someone else be the focus of the doctor’s attention at the hospital. He kept trying to be the focus of the nurses and we frequently had to remind him that he was not the patient, he was there as support. No he could not sit on the gurney (toddler sized), no he was not getting cream for the needle he wasn’t going to have. No, they were asking about Leo, not him. A bit more than a little frustrating for me (and dad), but a good lesson none the less.

He has been saying that he hopes that his surgery will be before Christmas, but I think that that is a defence mechanism based on the fact that he has seen a list of questions about heart surgery on his mom’s desk, and everyone refuses to tell him when it is. Being told it will likely be before Christmas somehow makes it more real and he doesn’t like that idea. I think it’s better than suddenly telling him he’s having heart surgery “next week”.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

I think that is really sad that his mother won't tell him. Especially when he's seeing those things. Okay mouth shutting. Sarah you are so patient. Maybe it doesn't feel like it, but I think I would have gone off already. And gardenbug, the memory books are AWESOME!!! We have them for Eli and we ALWAYS take them to the hospital. We just usually add some more pictures before we go. That way when he's there he can see everyone he loves.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Guess what!

I just found out that if you call On-X (the prosthetic heart valve company) that they will send you a complimentary t-shirt, possibly a demo heart valve, and an on-x ring in the size of your choice made from the same carbon fibre that the heart valves are made from! I just ordered one of each for Skyler!

gardenbug's picture
Joined: 03/12/07
Posts: 2025

Oh Sarah! That's so neat. You are the perfect person for him... REALLY! I love your idea of making him a poster of people who love him too. And a pillow too.

I would think he'd want the surgery before Christmas so that he could get back to school sooner and perhaps not miss so much. He does so love Christmas too, but it will be much calmer than he's used to. I HOPE!

I wonder if Indy will sleep near him for a while....and if his Dad will paint a mural in his room for him too...

Anyway, you are very patient, it is true. On the surface.

Joined: 12/01/05
Posts: 1000

I hope she doesn't spring it on him at the last minute. He needs time to prepare himself mentally, unless he's the kind of kid who will obsess and become really anxious if he knows the date ahead of time. (That's how Isaiah is, so we try to prepare him for upcoming events without giving him a specific date.)

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Well, we told him (all of us) after he went trick or treating on Monday night. He goes in for pre-surgery on Friday, and unfortunately I can't make it (I have some super important meetings I've been working up for for the past month and a half).

Joined: 05/05/04
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How did he take it?

I hope everything goes well today!

wishing4agirl's picture
Joined: 09/11/03
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"NatalieL" wrote:

How did he take it?

I hope everything goes well today!

Yes how did he take it?

gardenbug's picture
Joined: 03/12/07
Posts: 2025

It seems that Skyler now has a cough so we are not sure whether he will have surgery next week or next month instead.
Skyler had his pre-surgery day at the hospital. It seems that all Sarah's research was in line with the doctor's thoughts.

The surgeon said:
"Time to replace that Mitral valve. I'm planning to use an On-X valve (the new anti-stick Rolls Royce version that may be able to be managed with Aspirin instead of Warfarin (Rat poison medication Skyler has been on since birth). I have to run - there's an incident."

DH said, "Isn't there something to do with the Aortic valve as well?"

Surgeon, "Is there? I don't have the file on me, just a minute." He leaves and comes back a few minutes later. "Oh, right. Notes from Aug 9 meeting. He has MILD regurgitation in his aortic valve which isn't worth surgery, normallly. But since were going to be in there, I'll try to FIX it. If it doesn't look fixable, I'll replace it with a mechanical valve (On-X)."

DH: "So, we've been hearing about a 'Ross Procedure'. Would you try that?"

Surgeon, "NO. We only do Ross procedures to try to prevent people from having to use anti-coagulation drugs. Skyler is already on anti-coagulation because of his Mitral valve, so there's really no reason to do the Ross Procedure."

Now Sarah is really curious why there was so much talk about the Ross procedure over the last 12 years, and nothing about fixing Skyler's Aortic valve. She doesn't think she'll ever know. But either way, it's really nice to know that the research that she did was correct, and that the doctor is up on it! PHEW!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

"gardenbug" wrote:

It seems that Skyler now has a cough so we are not sure whether he will have surgery next week or next month instead.
Skyler had his pre-surgery day at the hospital. It seems that all Sarah's research was in line with the doctor's thoughts.

The surgeon said:
"Time to replace that Mitral valve. I'm planning to use an On-X valve (the new anti-stick Rolls Royce version that may be able to be managed with Aspirin instead of Warfarin (Rat poison medication Skyler has been on since birth). I have to run - there's an incident."

DH said, "Isn't there something to do with the Aortic valve as well?"

Surgeon, "Is there? I don't have the file on me, just a minute." He leaves and comes back a few minutes later. "Oh, right. Notes from Aug 9 meeting. He has MILD regurgitation in his aortic valve which isn't worth surgery, normallly. But since were going to be in there, I'll try to FIX it. If it doesn't look fixable, I'll replace it with a mechanical valve (On-X)."

DH: "So, we've been hearing about a 'Ross Procedure'. Would you try that?"

Surgeon, "NO. We only do Ross procedures to try to prevent people from having to use anti-coagulation drugs. Skyler is already on anti-coagulation because of his Mitral valve, so there's really no reason to do the Ross Procedure."

Now Sarah is really curious why there was so much talk about the Ross procedure over the last 12 years, and nothing about fixing Skyler's Aortic valve. She doesn't think she'll ever know. But either way, it's really nice to know that the research that she did was correct, and that the doctor is up on it! PHEW!

Actually thanks for this information. I'm glad her research paid off. I'll have to keep this in mind when Eli's time comes. However, his time may come in the middle of a surgery for something else, but I know it won't hurt to ask.

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

So far Skyler is doing better than we expected. I think part of his issue lies in the fact that he had no information. After the per-op, and we discussed some thing to expect post surgery, he's actually a bit excited (and nervous of course). He's dubbed Wednesday as "stress day", which is fine. We've been talking to him how stress is just "unhelpful" thoughts that need to be manage, how to deal with nerves, and that worry is normal, and that we would be worried if he WASN'T somewhat stressed!

Dad has taken the week off work and they are going to do "things" this week hoping to kick the last of the cough that seems to be getting better. It's mostly a cough due to a stuffy nose, which is different from chest infection, so we are still hoping for a thursday surgery. Any suggestions on getting rid of that nasal congestion FAST?

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Since my last post (10 minutes ago?), we got a phone call to say that his surgery has been postponed due to the CICU (cardiac intensive care unit) being over full. Skyler has been put on a short-notice list it the hopes that his "elective" surgeries will be within the month. We will likely get notified the day before.

gardenbug's picture
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Posts: 2025

I certainly would emphasize the excitement for him because to me, having more energy after all is said and done should be a major improvement for him. Definitely something for a pre-teen to look foreword to!
I'm glad he and his Dad are sharing good times.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Well it seems postponement is both a blessing and a headache. Those are all good strategies in helping him cope. I have no idea about the nasal congestion, but it seems now it may not be needed. KUP if you can.

gardenbug's picture
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There has been yet another postponement. Perhaps next Monday they say...

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Skyler got bumped AGAIN.... Don't they know that pre-surgery is the hardest part? The constant delaying just makes it harder!

We've gone from Nov 10, to Nov 14, to Nov 16, to Nov 21, and now we're told Nov 28!

As I said before, I'm not going to hold my breath.

sarahsunshine's picture
Joined: 11/29/06
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*bump*

Joined: 12/01/05
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Wow. I'll be thinking about you all tomorrow. I pray that everything goes smoothly.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

That is getting to be rediculous that they keep changing it and even sadder that they canceled AFTER they were at the hospital. At this point I would be beyond livid.

Joined: 12/01/05
Posts: 1000

Wow. How maddening! I'm sorry.

gardenbug's picture
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I sure hope they have all their ducks in a row for Monday!!!!

wishing4agirl's picture
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"gardenbug" wrote:

I sure hope they have all their ducks in a row for Monday!!!!

Ditto! And you all continue to be in my prayers as you go on this journey.