• How to get S to smile: Willy Wonka – “Violet! You’re turning violet, Violet!” Emergency OHS to keep HIM from turning violet. Oh, the irony! #
• Watching the sunrise http://flic.kr/p/73HfKA #
• Lucky Charms in the caf! http://flic.kr/p/73Hxo9 #
• Hanging out waiting for phlebotomy http://flic.kr/p/73EiJ6 #
• Xray and bloodwork done. Bandage removal and EKG left. Echo tomorrow morning… Getting there! #
• Field trip to the gift shop http://flic.kr/p/73KU4U #
• Met a dad in the elevator other day -13 yo son, cardiomyopathy, on transplant list. He got his heart last night! Miracles happen here. #fb #
• Sammy’s back! http://flic.kr/p/73LcLW #
• How to get Sammy to smile: quote Willy Wonka – “Violet! You’re turning violet, Violet!” Emergency OHS to keep HIM from turning violet, V … #
• I’ve missed this. http://flic.kr/p/73LYDN #
• Stepping back to reflect on the hugeness of all of this. So proud of my brave, amazing little man. #
• Do you see what I see?!? http://flic.kr/p/73SDD1 #

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• @cyclingwidow Those are AWESOME!!! How cute are your girls?!? in reply to cyclingwidow #
• Having a very hard time winding down and falling asleep .. you’d think I’d practically pass out cold, right? Oy! #
• Got some pics up – if yours isn’t there, (unless you sent to my cell) pls email it or DM a link. Keep ‘em coming! http://tinyurl.com/yazzlee #
• Getting dressed, coffee and heading over to hospital. The boys are heading down to xray soon. #fb #
• He willingly ate a few bites of waffle and most of a munchkin! Yeah! #
• They’ve also helf off on the diurel as he’s negative (peed more than he’s taken in). Hope that helps clear the effusion w/o dehydrating … #
• Effusion definitely smaller. Waiting on getting blood drawn. ETA for home on current recovery path – Friday. #
• Smiling! Doing artwork and smiling!!! http://flic.kr/p/73qSoe #
• Cheeseface! http://flic.kr/p/73tcLx #
• Motrin kicked in. Attempting dinner. http://flic.kr/p/73wfat #
• @nhweas very low potassium. We’re desperate. in reply to nhweas #

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• Snuggled asleep in the wagon http://flic.kr/p/732JAK #
• Labs drawn, xray done, momentus trip to the potty = very unhappy Sammy. Poor kid can’t catch a break. #
• Will examine xray and labs; pray for no change or change for better w/pneumothorax. Will take chest tube out after xray reviewed. #
• Might make it to the floor this afternoon, but we know better than to get hopes up. It is what it is. Just wish I could see him smile. … #
• Xray looks better! Chest tube to come out this morning. Talk of going to the floor after. He could use thoughts and prayers for his emot … #
• Closest to happy in days – m&ms. http://flic.kr/p/73697t #
• F*ck. Pneumothorax gone, pleural effusion in its place. Getting a pigtail (drainage tube) in 90 min to 2hr. Crap crap crap. #
• I think pictures/messages might help a bit. Maybe holding a picture/drawing w/his name if you have time? You can email, fb, mms, txt it … #
• Just did the chest xray. Pray that the effusion has begun to resolve itself. Will update in a few. #
• They’ve decided to hold off on the pigtail!!! They think diuretics might get it at this point. Taking chest tube out soon. #
• Saw a small smile or two this afternoon, and there’s a bed space waiting for us on the floor! #
• And I’m finally going to get out of my pjs, take a shower and maybe finally actually eat something! #
• Chest tube out, Sammy out cold from latest round of versed/morphine. Packing up to move to the floor! #
• Thank you so much for the pics – he will love! You guys all rock. Pls let me know if you don’t want them public – compiling a page. #fb #
• Yay, we’re on the floor!!! #fb http://flic.kr/p/73gPGu #
• Looking at potentially Friday for discharge… effusion needs to be gone, he needs to eating, drinking, walking. Still ahead: xrays, lab … #
• Yay, food! Better spirits, too! http://flic.kr/p/73ikbY #
• Starting to see glimpses of our little man. He’s still tired &sad, but talking more. He’s sleep now – I’m going thru the pics. Love! #fb #

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• Still intubated and mildly sedated. Sleeping. Sats at 96 on small amount of O2. Hopefully extubate by morning. #
• I am so grateful for my husband. He is so strong, especially when I can’t be. I couldn’t do this without him. #
• Awake! Extubated, central line out. http://flic.kr/p/72JMHK #
• Still not sure which is worse: having months to prepare yourselves & your kid for open-heart surgery – or three hours. Both suck! #
• Just heard from Jay – S had lots of lines taken our, cleaned up, in decent spirits considering. Heading over from hotel in a few. #
• Looks like the O2 is working on that pneumothorax. He’s napping. Another xray around 2. Pray that it has cleared up. #
• He’s been warm with a low-grade fever. Pray there is no infection. Thanks. #
• Resting with his O2 mask http://flic.kr/p/72PfFc #
• Should have asked them to save the device they removed from S’s ventricle; would have made for one hell of a show & tell item! #
• Poifect #
• Amazing what food &lemonade can do for a mama. Now to get S to the point where he can eat -still NPO until the pneumothorax is resolved. #fb #
• Just did xray; taking a very sad sammy for a wagon ride. Hope it cheers him up. #
• Not even a smile for a wagon ride http://flic.kr/p/72So3v #
• Feeling so sad for my little boy. #
• Xray back, pneumothorax same. Dr thinks it will resolve itself. He’s napping now, but can have food and drink when he wakes. Yay! #
• He can come off the O2 as well! #
• Some food! http://flic.kr/p/72YC77 #
• Jay just said, “Isn’t that a Dr Seuss book? Pneumothorax the Lorax?” Hee hee. #
• Went for a short wagon ride, then he wanted back in bed. He’s really so very sad. He just wants to be done and be home. #
• @originalstatia Have you seen the Save the Egg ep? “I’m rubbing the egg with my bum…(bum bum bum bum)” Cracks us up! in reply to originalstatia #
• Poor kid is going through morphine withdrawals. And he’ll need more in the am when they remove the chest tube. #

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• Off for xray & trip to fishtank. 10:30pm http://flic.kr/p/72tLEN #
• Frustrated that his sats are back down to 77. Really had hopes up for 90s, where he should be. Just so tired. #
• Up with Sammy, watching Backyardigans. Sats low – 72-73, sometimes dipping to 68-69. Lungs sound gunky… might be a potential cause. #
• Doing laps with Sammy in the wheelchair… Our own version of medical rounds. #
• Device dislodged; now in his ventricle. Will give more details in a bit. In the meantime, love, thoughts and prayers would be very much … #
• Sammy will be having open-heart to retrieve the device. He goes in an hour. Surgery should take 5 hours. Pls pray, send love, energy, ev … #
• They took him back about 15 minutes ago. And now we wait. #
• He’s in and on bypass. Actually surgery parts shouldn’t take too long. #
• Off bypass, closing him up. Everything went well. Still another 45 min or so before they bring him to CICU. #
• So grateful for the love and support of our families and friends. We couldn’t do this without you guys. Thank you. #
• Met with surgeon, everything went well. Will get to see him in 45 or so. Will blog w/full update, but sats are currently 100. PINK!!!! #
• Just got to see him. Looks good. Pink. Swollen. Intubated. One blake for chest drainage. Should try to wake slowly/extubate overnight-ish. #

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• It’s strange. I’m nervous about the cath, but also about seeing my kid pink; I’ve only ever known him blue, purple lips & fingers.Weird? #fb #
• Up and getting ready. Sammy can’t eat – just some apple juice at 8. Going to playground & playroom at hospital, then to cath lab for 10. #fb #
• @nhweas We’ll be over at the hospital – text or call and I’ll come meet you. Remind me to tell you about the PBS special. in reply to nhweas #
• Sitting in waiting room. Will update after he’s had the “silly juice” and is taken back. #
• First case taking longer. Sent us off to play, will call when ready for him – at least an hour. Poor kid is hungry. #
• Was doing just fine until we had to wait more. Waiting sucks. #
• Watching tv, waiting for sedation http://flic.kr/p/72mTV3 #
• They just took him back. As expected, took a lot to sedate him. Should get an update around 1. #
• @_Terri_ he’s VERY blue. Harder to see in pics. His lips are always a deep raspberry color and his fingers purple. in reply to _Terri_ #
• First update: sedated, IV in, checking hemodynamic stuff. Haven’t started any real work yet. #
• Leave it to sammy to do something rare. Large hepatic collateral that needs to be closed like the fenestration. #
• His PC has never seen this before, tho the cath dr has seen 10 or so, 7 purposely formed at CHOP. #
• Hopefully will be taken care of now; if not, maybe thru another cath; if not, potentially surgery down the rd. #
• Essentially, the blood thought (bc of difference is pressure) it would be easier to make a shortcut b/t his liver and his heart. #
• So there’s now this path/opening that shouldn’t be there that they need to close. #
• His PC thinks that this hepatic collateral is the cause for Sammy’s quick decline in sats over the last 6 months. #
• They’re done. We should get to see him in 20 or so. Definitely wasn’t a typical fenestration closing. #
• @mommacatz not sure. Since it’s not a perfect fit, there may still be blood flow around the device. Hope not, but it’s a possibilty. in reply to mommacatz #
• Got to see him. They gave him a little something so he’d sleep some more. Looks good. Rosy! Sats are 86, should settle mid-90s! #
• He’s been lying flat for 4 hours. 2 more to go! Playing w/the oxygen mask, alternating breathing from it & making the balloons blow away #
• Thank you everyone for rallying around Sammy (and us!) today. It really does mean so much. #

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• Off in search of something other than hotel-room coffee. Pre-op at 7:30: xray, bloodwork, ekg, etc. Will, of course, update often. #fb #
• Me too!! RT @echoleigh: I’m very proud of Glee for the entire Curt storyline. Wonder how many parents & kids that will affect. #
• Playing while waiting for vitals http://flic.kr/p/722RYn #
• Almost done. Bloodwork, consents left. He’s been wonderful so far! Flirted like mad w/nurse Janelle. #
• NOT happy about the EKG http://flic.kr/p/7236dM #
• NOT happy about the EKG http://flic.kr/p/7276rf #
• Playing while waiting for vitals http://flic.kr/p/727EfU #
• Playing outside. J signing consents. #fb http://flic.kr/p/723EXH #
• Sorry for the double & triple tweets/pics/fb updates. Connection at the hospital is wonky. Almost done w/pre-op. Cath tomorrow morning. #fb #
• NOT happy about the EKG http://flic.kr/p/724xPB #
• Playing outside. J signing consents. #fb http://flic.kr/p/724yQM #
• Done with pre-op. He’s second case tomorrow – 10 am. #fb #
• Back at the hotel. S watching long-longed for Backyardigans DVD (reward for being brave today). J napping… thinking of a nap myself. #fb #
• Playing outside. J signing consents. #fb http://flic.kr/p/72aTcw #

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• An explanation of what Sammy will have done on Friday: http://bit.ly/Q1yKr #fb #
• @ninjajordyn Yup. He had it last May. Sats are VERY low (tho that doesn’t slow him down!) – 60s/low70s. Hope this brings them up! in reply to ninjajordyn #
• @ninjajordyn he’s always been super energetic, even compared w/hh kids. And his PC expects an increase in his energy after this! in reply to ninjajordyn #
• @biff423 thanks. Sammy has a fenestrated LT Fontan. How is your little one doing? Also hlhs? in reply to biff423 #
• Just had a fun picnic breakfast w/sammy at local park. Fed & chased some geese. Now, off to school, then pack the car & head to Boston. #fb #
• Kids are SO into Cat on a Hot Tin Roof. Makes my heart happy. #fb #
• Freaking traffic. It’s taken us just as long to go the last 2 miles as it did to go the first 20. Could almost just turn the car off. #fb #
• In the CHB parking lot http://flic.kr/p/71TM58 #
• @chele76 I cope by eating. My dinner had 1050 calories in it… and counting. in reply to chele76 #
• Heading to the hotel http://flic.kr/p/71YNn3 #
• Sneaking out to the food court for some coffee. Checked in, hoping S is asleep in time for Glee. #fb #
• @chele76 try it with some splenda and vanilla or almond extract. Yum yum yum!!! in reply to chele76 #

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• Absolutely bizarro dreams. Not fun ones, either. Time to make the donuts. Would rather sleep some more. *Grump*. #
• Rich saves the day by lending me his copy of The Miracle of Life! (Not sure why he owns it, but whatever! ) Thank you!!! #fb #
• Student struggling w/essay, shut down, let him express understanding by writing it as rap lyrics. Entire demeanor changed, rocked it! #fb #
• @ChristineLeiser Lucky to work in a place that encourages alternative approaches. There’s a reason these kids didn’t make it elsewhere. #
• @ChristineLeiser I’m sure other teachers do the same things – but I’ve never worked in a traditional high school. in reply to ChristineLeiser #

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• Crappity crap crap. Was planning on showing Miracle of Life while out this week. Local library said it was on shelf. Lie! What now? Crap #fb #
• @reznicek111 not a subscriber, need for thurs gah! in reply to reznicek111 #
• Dinner w/neighbors. Pulled pork & deb’s homemade cornbread. A bottle of wine, beers for the boys, kids on youtube. This is how I cope. #fb #
• Leave Sammy alone with youtube, he ends up on “Oh no, My Kitty is Emo”. Bwahahah. http://bit.ly/Vwjj9 #
• FTR, I’ve taken to calling S ‘Pete Wentz’, or more affectionatel “emo boy”: “But whyyyy don’t my friends want to say goodbye to me? Wahhh!” #
• T minus 24 to the HIMYM season premiere, then shower, lunch-making, and FINALLY Big Bang Theory season premiere. Woo hoo! #fb #
• @reznicek111 Thanks! I had them watch selected chapters last week – though many of them eeew’ed out of a few. in reply to reznicek111 #

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