Surgery... and post-op

[Bina]

These first few days are rough and yukky....then things can improve steadily. Best wishes to Skyler
(my husband used to bring me bran muffins and a home-made egg sandwich)

 

[Greg a]

Sarah BRAVO sounds like Skylar is on the right side of the mountain and may God smooth the road ahead for him

 

[Superbob]

I hope the recovery road just gets smoother and smoother for Skyler from here on.

 

[sarahsunshine]

They just deleted my post AGAIN! I think it has to do with the connection here at the hospital.

Skyler is still doing great. After spending all day yesterday begging for more water and being seriously rationed (8ml/hr) he proceeded to throw up all his water and apple juice - after his mom left and before his dad got back to spend the night with him. Unfortunately he tossed all over his heart pillow, so he's back to his 'cough buddy'. So glad that he had two.

Dad woke up in the middle of the night (many times), to find Skyler dragging his equipment across the room and trying to get to the PS3... Dad leapt into action and got him back into bed!

As of a few minutes ago they took him off of morphine and intravenous heparin. They are hoping that he will eat more so that they can give him warfarin.

 

[Lynlw]

They just deleted my post AGAIN! I think it has to do with the connection here at the hospital.

Skyler is still doing great. After spending all day yesterday begging for more water and being seriously rationed (8ml/hr) he proceeded to throw up all his water and apple juice - after his mom left and before his dad got back to spend the night with him. Unfortunately he tossed all over his heart pillow, so he's back to his 'cough buddy'. So glad that he had two.

Dad woke up in the middle of the night (many times), to find Skyler dragging his equipment across the room and trying to get to the PS3... Dad leapt into action and got him back into bed!

As of a few minutes ago they took him off of morphine and intravenous heparin. They are hoping that he will eat more so that they can give him warfarin.

Sound like things are going well, except for the stomach, hopefully he'll keep things down from now on, since he got things out.. Glad he has the PS3 in his room, that helps alot with the boredom.
I know how frustrating it is to lose posts, IF I write long ones i copy it before i hit post, that way if it disapears i just have to paste it when i try again

 

[sarahsunshine]

Skyler has now had his pacemaker wires pulled.

He got up again to go to the bathroom and it was a big ordeal - walking like an old man on oxygen. Then someone mentioned that there was pizza being served just outside the Pediatric cardiology ward. All of a sudden it became his mission to get there. We told him he had to get there himself but we got a wheel chair so he could rest when he needed to. He rested after going about 15m. Then all of a sudden he practically sprinted there. He didn't want any help, he just wanted to get there. We were all terrified he was going to trip over his toes, but he made it there just fine. After that, the nurse came out and told us that they had suddenly decided that he had to have his pacemaker wires out "in five minutes exactly at noon." Why do they have to be so precise on that sort of thing?

Anyway, he ate a couple bites of pizza, and is now resting. He is definitely breathing a lot better than he was even this morning, and getting better at using the spirometer.

Surprise surprise... The nurse said that they may let him go home TOMORROW! Both mom and dad are hoping he stays in for an extra day or two (until Sunday), so we'll just have to see. Tomorrow he is getting an echo and an X-ray to make sure all is well.

Today he has a whole list of visitors coming, starting with his siblings early this afternoon. He is really looking forward to that.

 

[Greg a]

Pizza is one of Health Canada's food groups ?????????

 

[sarahsunshine]

Thursday Skyler again improved drastically. His breathing is better and he is off oxygen. He was very sick of his bed and figured out how to con Dad into being his therapeutic cushion so he could lie down partly on Dad for his afternoon nap. Not so comfortable for Dad, but a vast improvement for Skyler! Another reason Skyler wanted to sleep on his dad is because there is a window he could look out of more clearly from the guest bed that his dad was trying to nap on.

The hospital is made on a bunch of multi-floor atria, each of which has about a six floor ceiling made of glass. This means that every patient room in the hospital gets natural light. It's very pleasing. Skyler also happens to have the room directly across the atrium from the glass elevators so he can watch visitors come up from four floors down, get off the elevator, and walk around to his room. He's got ample warning. Yesterday he was sufficiently alert that he could keep track of that and enjoyed it.

Odd - I thought that this had been posted on Friday morning.

As a further update, Skyler just left the hospital at noonish today (Sunday). He's been restless and ready to go except for his INR levels. I find it odd that the doctors didn't want to discharge him yesterday even though his INR was at 2.0 . We've managed his INR at home for the past 12 years and many times it has gone below that, why now can we not do it ourselves? But, be as it may, he is now out of the hospital and very glad to go home.

As for the saga of divorced parents, we needed to have both INR monitors calibrated when Skyelr had blood work taken this morning. Biomom calibrated hers and then quickly ran home with all the INR test strips. We got to the hospital 45 minutes later. She told us that it was to hard to test both machines at once. Then she told us she took all the strips home so we couldn't do a test to calibrate our machine... Oy! Then we had to get the nurses all worked up trying to find some test strips around (they didn't have any in the nursing station and couldn't get a hold of the thrombosis clinic since it's Sunday)... Geeze... Why do some people always have to try to make things hard for others?

And yes, Skyler would love to say that Pizza is oe of the Food Groups! In fact, it's all of them! Dairy, grains, protein.... Nope, he would disagree that the fruits and vegetable are a necessity. that would be the "pills" category.

 

[dcc617]

Sarah - I haven't logged in awhile and see what I miss? Very happy to hear things are going swimmingly. Tell him to keep up the good work.

 

[sarahsunshine]

Yes, he's doing great.... It's still amazing to us that his ascending aorta as at 5cm and no one had a clue... 5cm is big to begin with. 5cm on a 70lb kid is MASSIVE!

 

[Bina]

It's good to read that Skyler is doing so well. Heck, he is doing much better than I was at that point in time.
Kids are amazing little critters

 

[hannahsmom]

Good morning Sarah,

I am so happy for your and your family! It sounds like he is doing wonderfully and that you had the best care for Skyler!! It is good to hear that the surgeon's have done what they can to hopefully avoid future operations.

Skyler will continue to be in my prayers as he continues his post-op recovery. You will be amazed at how much faster he will recover now that he's home. I will also pray that "mom" will realize what is most important and will work with you and Skyler's dad to give him the best environment possible during this trying time.

Best wishes,

Kelly

 

[sarahsunshine]

And Skyler continues to improve (or so his mom says). We saw him this morning when he had an echo.

I had a chance to read the TEE reports from pre and post surgery, surgery day, and now I'm really confused. According to the surgeon, he replaced the two valves, and the ascending aorta which was fit to burst. He did not replace the aortic root because it was fine. I asked him specifically why he didn't replace the aortic root and he said that it shouldn't be done when it's healthy...

According to the TEE post surgery (surgery day), both the aortic root and the ascending aorta were enlarged. Also, that both valves (mitral and aortic) and the aortic root were replaced...

So now, do I believe what the surgeon said when we spoke directly about it, or do I believe the echo summary post surgery?

I guess I'm going to have to ask the cardiologist on Jan 3, if Biomom lets me in. Maybe he'll give me a third story?

 

[Jkm7]

I've been away and am just now reading this thread.
So happy to read how well Skyler is doing. Hope he continues a bump free recovery.

 

[Bina]

And Skyler continues to improve (or so his mom says). We saw him this morning when he had an echo.

I had a chance to read the TEE reports from pre and post surgery, surgery day, and now I'm really confused. According to the surgeon, he replaced the two valves, and the ascending aorta which was fit to burst. He did not replace the aortic root because it was fine. I asked him specifically why he didn't replace the aortic root and he said that it shouldn't be done when it's healthy...

According to the TEE post surgery (surgery day), both the aortic root and the ascending aorta were enlarged. Also, that both valves (mitral and aortic) and the aortic root were replaced...

So now, do I believe what the surgeon said when we spoke directly about it, or do I believe the echo summary post surgery?

I guess I'm going to have to ask the cardiologist on Jan 3, if Biomom lets me in. Maybe he'll give me a third story?

If it does turn out that the aorta root was not replaced, try not to worry...My root was also enlarged before
surgery and wasn't replaced. It is somewhat common that the root becomes enlarged when it is dealing
with extra force from the heart struggling to pump blood through bad valves. My surgeon assessed the situation,
examined the tissue and made a decision based on that. At 6 years postop my echoes are still showing that my
aorta root is stable.
Best wishes to you and your family.

 

[nngbwh]

Keep it up Skyler. Wishing you a smooth recovery.

 

[sarahsunshine]

Skyler's mom just called to say that he was re-admitted to the hospital (no beds available so they don't know where to put him). He was slowing down today and feeling crummy. He had a little bit of discharge coming from his incision (I think). He has extremely high white blood cell count and high "celiac" count (don't know what is meant by that). Dad is going to spend the night at the hospital with him. Of course, the house is upside down because a simple cabinet installation turned into a full blown kitchen repainting and we just took off 2 walls of wallpaper and every counter is full of stuff.

 

[Lynlw]

I'm very sorry to hear this. Hope it turns out to be something very minor. has he had a fever?

 

[Bina]

Skyler's mom just called to say that he was re-admitted to the hospital (no beds available so they don't know where to put him). He was slowing down today and feeling crummy. He had a little bit of discharge coming from his incision (I think). He has extremely high white blood cell count and high "celiac" count (don't know what is meant by that). Dad is going to spend the night at the hospital with him. Of course, the house is upside down because a simple cabinet installation turned into a full blown kitchen repainting and we just took off 2 walls of wallpaper and every counter is full of stuff.

Hopefully Skyler will be fixed up quickly and back in action .

 

[sarahsunshine]

Yes, he had a low-grade fever today.

And yes, Bina, I hope so too - for his sake, and for the sake of our kitchen!