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Skyler just had his "1 year" appointment about 2 months late. He's gained 30 pounds since his surgery, but only 2 inches. He's finally got some meat on his bones, and not the smallest in his grade. His feet have grown about 3 sizes! And he's almost 14! OY! His doctors say he is doing great, but...

Just thought I’d update – it’s been a while. Skyler had his 6 month post-surgery check-up. Actually, it was more like 7.5mo. He’s doing GREAT! He’s grown 1”, but gained 14lbs (went in at 67lbs and is now 81!). He’s still skinny, but it just puts into perspective HOW skinny he was pre-surgery...

Hi all, After all the discussion over the various new drugs, it occurred to me, why don't people use aspirin only instead of a combination Aspirin and Warfarin? I haven't looked into the research yet, but maybe someone else can explain this to me?

After the past 2 frustrating (infuriating?) months of trying to get Skyler's INR stable, we finally managed to get it above 2.5 for the second time since the end of January! The thing is that his dose is extremely high, and that worries me. As a recap, Syler has 2 On-X valves and a graft of his...

Every since Skyler has had surgery we have been having a terrible time trying to stabilize his INR. We have been on a self management program for over 6 years (DH, me and Skyler) and are very used to the particulars of how Skyler and INR react. Pre-surgery, we could pretty much guess exactly...

We’ve noticed that Skyler’s warfarin dose does not seem to work for him post surgery. Both his INR thrombosis clinic and us thought that going back to his previous schedule would work nicely (alternating 8mg and 8.5 mg). This used to keep his INR around 2.7-3.2 range, with occasional fluctuation...

Who has a medic-alert bracelet (or similar) and what does it say on it? Skyler's Doctor says he should have one and wear it all the time (fidgety 12yo will lose it in no time, just like the Medic'Alert Dog Tag Necklace we got him). I'm trying to figure out what to say on it too. Everything...

In all my research over Skyler’s heart surgery, I discovered that contrary to what I had been told in the past, that there is a genetic component to most heart defects. Several of these studies suggested having family members evaluated. Of course, none of Skyler’s doctors has ever mentioned it...

Skyler’s been on Enoxaparin (think heparin) for the past several weeks because the antibiotics he’s on (Cefazolan and Rifampin) make Warfarin ineffective. He will be on Enox- for at lest another 3 weeks. They still kept him on a dose of 12mg/day. At his last doctor’s appointment, we got the...

How does the pain in having your chest tube removed compare to child birth? Skyler has asked me for years about what it feels like to have a baby… His grandmother connected the two ideas. Now I’m asking for evidence. Is there even a comparison?

Yesterday afternoon Skyler went very quickly from feeling fine, to feeling pain in his legs, to extreme pain in his fingers and toes. Has anyone else felt this type of pain and have any hints suggestions? He's still in the hospital until the 24th. Our thoughts: Low magnesium Diabetes (but he...

Skyler was readmitted to the hospital yesterday with an infection from his incision and a fever. They are concerned enough that they called in a team and he is currently in surgery. I'll keep posted.... I really hope it's not one of these terrible super-bugs and not in the bone.

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.

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.

I know there have been quite a few people asking here, but this post is purely out of curiosity. I have a firend who's son has had several open heart surgeries (poor kid is only 4), and she claims that he has always healed faster from the "big zipper" than the "minimally invasive" surgeries. For...

Nov 27: Looks like it's still a go. Need to be at the hospital for 6am. Surgery time at 8am. Nope, Skyler doesn't like the 12hr heparin shots... You'd think that he would have learned to deal with a fear of needles over the years but nope, he's terrified every time still, poor kid. Must feel a...

The date has been pushed back. Surprisingly, it's not due to Skyler's cough, it's because the CICU is full. They need to make some space first, and since his surgery is "elective" instead of "emergency", he gets pushed back. He is being put on a "short notice" list, though, so we may only find...

Yesterday was Skyler's pre-op appointment. Skyler's bioparents met with the surgeon (I couldn't be there). As you know, this is a point of contention with me because I have done all the research and they haven't. I've been around for all of Skyler's life that he can remember. But, I sent a...

OK, so what would you suggest taking to the hospital? Maybe items he should have post-surgery? I'm sure the necessities will be covered, but what about the things it would be great to have, particularly for a 12yo? I hoping to get a good list so that we miss the fewest things possible. Someone...

Hi All, This coming weekend is the last weekend before Skyler’s big surgery… I was hoping to make him a heart pillow for coughing (and finish the quilt I started him back in March)… maybe I could even add an attachment for the seatbelt? Could everyone that has one post a photo of what their...