Surgery... and post-op

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sarahsunshine

Well-known member
Joined
Aug 8, 2011
Messages
387
Location
Canada
After many re-schedulings, Skyler went in!

Now we are to wait 4-5 hours. It's 9:15 now, and they took him about 20 minutes early.

I'm now hooked up to the hospital Wi-Fi, so I'll keep you updated as things go.
 
What a relief it is to hear they didn't changes thing again and he is in surgery now, altho that comes with its own sets of stresses. Thanks for the update looking forward to hearing good news thruout the day
 
Lynlw said:
What a relief it is to hear they didn't changes thing again and he is in surgery now, altho that comes with its own sets of stresses. Thanks for the update looking forward to hearing good news thruout the day
Click to expand...

Ditto and thinking good thoughts for Skyler!
 
Skyler was at his mother's house last night, so we met them at the hospital a few minutes after 6am. We were told that surgery time was changed from 8am to 7am, but it ended up being about 7:40am when he was put under. I gave him the box that Larry (mentu) sent that had a couple letters and a wonderful "cough buddy" bear in it. Skyler was very happy to get it. He was so excited to have something to distract himself with, gave it lots of practice hugs, and proceeded to wrestle with very roughly on the bed. The poor "cough buddy" got a hole in it and I spent the next couple hours trying to find a needle and thread to fix him up. He's fixed (don't know about the quality of the mending job), but hope he will last. I don't know that Skyler will be up to rough-housing with him for a while!

Besides the few last-minute panics (when the cot was wheeled in and asked to get on, when they asked him to take the first oral medication to make him relax and go to sleep) he did great. I must say that I am very surprised by how well he has been coping. Lastly, he voiced that he much preferred being at dad's house (because the weather is warmer and it doesn't bother his breathing)!

It also seems that he much prefers the way his dad and I gave him the heparin than the doctor friend that his mom had do it. He said that it hurt a LOT more where the doctor did it, and that the pain lasted a lot longer and it bruised...
 
We just spoke to the surgeon (Dr. Ivan Rebeyka). Surgery is not yet finished. Skyler is being "warmed up" on the heart/lung machine.

Dr. Rebeyka put in a 25mm On-X valve in the Mitral Valve location. He replaced the Aortic Valve with a 23mm On-X valve as well. He said he could have repaired the aortic valve, but that he felt that it would only hold between 1-10 years. Going for the option of "no future re-surgery", he put in an On-X.

Lastly, and surprisingly, he found that Skyler's ascending Aorta was very thin and 5cm in diameter. He took it out and replaced it with a dacron graft.

He is happy with the way things went. We wil have to watch out for the size of the Aorta in the future, though.
 
That sounds good! From one double-valver to the mom of another, I like the doctor's pre-emptive strike on the aortic valve and the aorta. Besides, if Skylar's got a mech mitral valve, he's going to be on coumadin anyway, so the second mech valve is not such a big deal.

Bear hugs to you all!
 
Wishing Skyler all the best. That is quite a surgery at such a young age, it really puts things in perspective for all of us. I'm a pretty regular reader of the posts around here, and I must say that you've done an amazing job these last few months researching and preparing, Skyler is a lucky boy to have you in his life. Hope that everything transitions smoothly into recovery, and will look forward to more good news.
 
With a bunch of things going on, I haven't had a chance to update.

Skyler made it to the PICU at around 3:30pm, making the whole surgery around 7 hours approximately. They are going to keep him sedated and unconscious for about 24h - until tomorrow afternoon.

Throughout this afternoon and evening they have been dealing with various issues relating to bleeding and maintaining his blood pressure between 85 and 100 systolic. From 4:30-5:30 they decided to try to wean him from some of the drugs. It seems however that they either switched, or put him back on because he was waking up and moving around quite a bit. By 5:30 he seemed to have settled down a bit.

Mom has been doing some "healing energy" work with him until 7-8pm and then went home to get some rest. Dad and I came home for some dinner and to help put the little ones to bed (some family friends took care of them for us today), and then dad went back to the hospital until about 1am. Tomorrow morning Mom is planning to be at the hospital at around 7am, and Dad will get in later in the morning. I will deal with the little ones and get in to be there for noonish. At least that's the plan.

As the surgeon said, the 12-24hr period is the critical time.
 
Thanks, everyone for your well wishes. I've got the kids to the day home for today, and we will be heading to the hospital shortly. I planning to get some other things done but that will have to wait for tomorrow.
 
Thanks again for the well wished! They are working!

Skyler continue to steadily improve. He went through the "critical period" with flying colours and no issues other than his blood pressure is on the slightly elevated side. He has used up his allotted amount of a certain medication to decrease his blood pressure, so they were just going to wait it out.

At 12:30ish they extubated him, and he has dealt with that swimmingly. He has been swimming out of his morphine induced stupor more and more frequently throughout the afternoon. At times he is perfetly aware of everything going on, telling us exactly where he is and what has been going on (I'm in the PICU. I'm starving Can I have more water?), and other times asking where he is and whether he's had his surgery yet. He has started coughing a little and has tried using his bear but he can't give it a firm enough hug yet. By the time we left to pick up the little ones he had been eating ice chips for several hours. When I told him that we were leaving he told me he loved me and wanted to give me a huge hug and kiss which was rather awkward with all the wires and tubes (not to mention the fact that his mom has been insisting that he's terrified of his dad and I for the past month and she was standing right there). I got a bunch of good photos for the memory book that I told him I would make for him, and he insisted on SMILING, and giving a thumbs up (with his glowing red thumb) for a lot of them!!! What a ham.

Right now they expect that he will be out of the PICU tomorrow afternoon or evening, and into the children's cardiac ward where he will have a shared room (it's all they have) instead of being one bed among 5-6 in an open row. He will be allowed unlimited visitors at that point, and considering he's invited his entire school for a visit, that is likely important! He will also have a cot in his new room for an overnight visitor which will make things easier for everyone.

The only difficult thing that we have had to deal with was that they have had to close down the PICU several times today to do various "procedures". When that happens they make everyone leave. Unfortunately that means that nobody could be with Skyler for a couple hours when he was first extubated and waking up. He didn't like that one bit.

There was another set of parent whose 5month old twin son had just come out of OHS (the other twin was with them and fine) and they had been told that they could see him in 2 minutes when the PICU was closed and they were quite frantic believing that it was their son having difficulties. As it turned out it was not, and their son was doing spectacularly after a Yasui procedure.
 
We just got a phone call from the hospital (mom is there right now). They are "in the process of" pulling his drainage tubes, and moving him out of the PICU to the pediatric cardiac ward. We are packing up our stuff to head over right away.

Skyler has also been eating a lot of ice chips and they are slowly getting him back to clear liquids and solids. Chicken soup sounds about right so we are going to bring some. If he eats it, fine. If he doesn't, I will!
 
I have been following your updates on Skyler and am so happy to see that the little man is doing so well. I will continue to pray for him and your family. Just don't forget to take care of yourselves. Rest is important for you and his dad also. God Bless You All
 
I had written a big post but it seems to have been lost in etherspace.

Skyler was moved up to the Pediatric Cardiac Ward at about 12:30. Skyler was in the middle of a really good nap and didn't even wake up until they were transferring him to his new bed. Then he fell right back asleep and has been sleeping pretty much since then.

They have him on tylenol (450mg) and ibuprofen (300mg), as well as a low dose of morphine. He's had his drainage tube pulled out, and his femoral and jugular lines have been removed. He is on Oxygen and heparin. Skyler is insanely thirsty and they are rationing his liquids to 1100mls until 6 tomorrow morning. He'd drink it all now if he had the choice.

The pediatric cardiac ward is nice because there is much less traffic, and much fewer electronic beeps and machines. There are only shared rooms, however, and Skyler is sharing with a 3year old who is busy screaming his head off because he is terrified of a line flush. Hope he quiets down soon. He has someone with him constantly which is good, but he's a little kid having a tough time. Skyler is mostly deaf in his left ear and a little deaf in his right so that probably helps. He's also used to his one and two year old siblings so he may be a little used to some crying. All that and there is an intercom about 14" from his head which they can't turn off.

At about 2:30 he woke up and is pretty alert. There's a PS3 that belongs to the ward and he really wants to play his new game.

He's also done his first go on the Spirometer.

Another observation is that his sternum seems to look a lot better than it did pre-op. His Sternum healed very strangely from his surgery at 4 months old and he always seemed to have a big dent in the middle of his chest. We hope that the new re-surgery has helped that a little cosmetically. Dr. Rebeyka said it may take him bit longer to heal than most because they did a little reconstruction of his sternum that will make it unstable for longer than normal.

Lastly, they gave him a heart pillow. It's not as solid as the cough buddy that Larry sent but Skyler did a comparison and finds that the heart pillow works better right now. Sorry 'Cough Buddy", but whetever helps!
 
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