Update on Skyler

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

I haven't been around much lately - things have been crazy with Skyler's heart surgery. Here's a summary for those who don't know what's going on, but I keep the thread here (http://www.pregnancy.org/bulletinboards/showthread.php?684472-Today).

Here's a summary:

Skyler has had heart issues since he was born, involving aortic stenosis, accidental ripping out of his mitral valve at 9 days, open heart surgery at 17 days to try to fix it (didn't work), and open heart surgery at 4 months old (his parents were told he wouldn't survive). His parents were told that he would have to undergo heart surgery by the age of 3-4 to replace the valve that was put in due to it's small size. This past summer, at 12 years old, we were finally told that his mitral valve needed replacing. A date was set for November 10. After many postponed and rescheduled dates including on the 21st when he was about to get his IV drip and they cancelled the date while he was at the hospital, Skyler finally had his surgery in on November 28.

Skyler went into surgery at about 7:40 on Monday morning. He got to the Pediatric ICU at about 3:30pm on Monday, making the total surgery time about 7:30-8 hours. They decided to keep him sedated until Tuesday to allow his body to heal without him moving. After having various normal issues related to bleeding, blood pressure, lots of drugs, and basically turning your body off for 7.5 hours, throughout Monday night/Tuesday morning they decided to wake him up on Tuesday noon-ish, though he remembers nothing of Tuesday. On Wednesday morning they removed some of his drainage tubes, arterial drips, and wires. Around noon, though he was still phasing in and out due to the morphine drip, they decided that he was stable enough to move out of the PICU, and take him to the pediatric ward. Yesterday, at 10am the took him off morphine. At noon they took out the remainder of any wires (basically just the pacemaker). He is doing surprisingly well, but wants to go home because his grandmother bought him a PS3 and he has a new Wrestling game...

In terms of surgery, they replaced two heart valves with prostheses (mitral and aortic). They had a surprise: they found that his ascending aorta was 5cm in diameter and very thin. In most adults, the ascending aorta is supposed to be around 3cm, and bigger than 4.5cm is considered an aneurism. So in a 70lb kid, 5cm is pretty scary. They removed it and put in a Dacron graft (think a tube of kevlar-type material that is inert and gets recolonized by human tissue). They also reconstructed his sternum since it was relatively misshapen from his previous surgeries when he was 4 months old. Right now it looks pretty normal which is rather odd for Skyler! If all goes well he won't need any heart surgery ever again!


Skyler was readmitted to the hospital on Saturday (Dec 11) with a fever and painful incision. Despite being on antibiotics all night he was feeling pretty lowzy. I guess Skyler's incision started to ooze pretty seriously Sunday morning on its own. They got the surgical team together and had to open up the incision and his sternum. The infection was all behind the sternum. Now's to hoping that they got it all, that they are giving him the correct antibiotics (they haven't got the results back from the labs and he's on Vancomycin and Gentamicin and another I can't remember the name of), and that they didn't get the infection to spread to the bone while cleaning him out...

High doses of intravenous antibiotics are worrisome as well since he lost much of his hearing due to huge doses of gentamicin and something combination as an infant (he's deaf in one ear and has high frequency hearing loss in the other). He likely has to be on it for 6 weeks - intravenously. Ugh. I was on intravenous antibiotics for 3 days once and that was bad enough.

Anyhow, Skyler was back in the Pediatric ICU Sunday, and back up to the Pediatric ward sometime Sunday night.

And here's what I found out from reading the reports in his binder:
1) While they were in there they added a suture to his ascending aorta graft. Not sure why.
2) I read the history since Saturday in Skyler's binder. Skyler had a fever of 39C (102f) for 2 days. The HealthLink (hospital) called to check up on how Skyler was doing on Saturday, and his mom said he was fine but that he had had a fever for 2 days and that his incision hurt. They told her to get him to the ER immediately. In the ER report, it said that she had given Skyler Ibuprofen to reduce his fever... Now, I know I feel powerless in all this so it accentuates everything, but the release stuff says that if he gets a fever post op to call the nurse/doctor immediately. Why didn't she do that? And why is she giving him ibuprofen? We've discussed this with her many times, yet she doesn't listen! ARGH! This makes me so frustrated.

Skyler was not happy camper Monday. His chest hurt, he ached, and they stitched him up instead of gluing him so that it has a better chance to drain. He's having a much harder time dealing with this than the first surgery, mostly due to the fact he was not prepared for this and we had a long time (12 years?) to prepare him for the surgery. He keeps saying that he shouldn't have said anything so he could still be at home and not have had a second surgery. Oh, the mind of a 12yo...

We are waiting for the results of the antibody tests, the ones that will tell us what antibiotics he should be on, but the results haven't come back yet. How long do they usually take? The samples were taken Saturday afternoon and Sunday morning. It's now Tuesday. They say that he MAY be out this weekend, but not if they can't get a handle on this infection.

In better news, he and I managed to figure out how to get him in a reclining chair so that it makes it easier for him to sleep and get up, and most importantly, pee. Getting up from lying down is a HUGE ordeal (it took us 15 minutes to get him to stand up from lying down on his bed), so this was a vast improvement.

If something happens different, I'll update.

Joined: 12/01/05
Posts: 1000

I saw there were no replies on this. I replied on the Special Needs board, but I thought I'd respond here. I wanted you to know I'm thinking of Skyler. I hope he's home by Christmas.

Starryblue702's picture
Joined: 04/06/11
Posts: 5454

Wow, what an ordeal. T&P going out to him!!

Joined: 07/27/06
Posts: 722

Im sorry I must not know your history... First of I am so sorry you are dealing with this! I am praying for healing and a quick recovery for Skylar. I hope he is home for the holiday! How is he related to you?

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

Skyler is my step-son. I've been in his life since he was 6, and he spends every other week with us. Many days I feel that we do more good for him than Biomom, but we won't go there!

Skyler is also an awesome brother to Ivy and Leo...

Lots-o-Tots's picture
Joined: 01/29/06
Posts: 574

What an ordeal . . . so sorry your family is going through this. Thinking of you.

Joined: 07/27/06
Posts: 722

Oh...I really hope he heals quickly! Im so sorry your family has this stress!! t&p are with you!!

ashamom27's picture
Joined: 07/06/06
Posts: 1010

Oh Sarah- I had no idea about his surgery ( surgeries!!) I am so sorry you all have been dealing with this and it got so bad! Big huge hugs to you, Wayne and Gardenbug. Your whole family will be in my thoughts. I hope Skyler recovers well. Definitely talk to him about the gravity of him reporting his symptoms. He might try to hide any infection to avoid hospital, but that could be so dangerous. Hugs again!!

Joined: 01/25/02
Posts: 2023

wow! I'm sorry that Skyler has been through so much recently. I hope he continues to heal well, and I agree with Asha, he needs to know the importance of reporting symptoms, especially if his mom is not going to. Hugs to you all!

Joined: 07/21/02
Posts: 1007

I hope he is recovering well! Sorry your family is having to deal with this. My big brother has had several heart surgeries, beginning at about 3 yrs--it is stressful for everyone!