Yup, we're still here. Rumor has it, though, that we'll be headed home tomorrow as long as his morning xray & bloodwork all check out okay. He's definitely getting back to his old self, playing, squirming and laughing up a storm. We've also had a couple of firsts since we've been here.
Sammy sat up on his own! I took him to the playroom, and sure, he only maintained his balance for fifteen seconds or so, but he's getting there!
Even better? This:
We had planned for a little "celebration" before we left. Up until now, Sammy's only ever had breastmilk, formula & rice cereal. Since he's taken to latching on to the bottom of our Starbucks cups and sucking off the water, reaching for whatever we're eating and getting pissed if we don't give him any, we thought we'd celebrate making it through the surgery with his first taste of "real" food - BANANAS!
There's a little video of him eating here. It's pretty dark and hard to see, but we only had our regular digital camera with us, so it had to do. He couldn't get enough of the bananas - he would grab for the spoon and shove it in his mouth. When we would come at him with another spoonful, he'd go full-body excited - arms and legs kicking and waving, eyes really big, and little excited sounds coming from his mouth. He LOVED eating those nanners!
So while we were really disappointed we didn't get to go home today, it turned out to be not all that bad. :-)
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Still truckin' on along. Sammy's feeling and feeding much better. They're going to remove the pacing wires today, and they've started the discharge routine - xray, blood workup and EKG this morning, echo likely tomorrow morning. The only thing really keeping us here at this point is the dosing on his captopril (for his blood pressure). Once they figure that out, we should be heading home! We're still hoping for tomorrow, but like I've said - we've learned not to get ahead of ourselves around here. As long as he keeps going as well as he has been, we're happy. One day at a time.
Even better? Our surgeon and our cardiologist had a meeting of the minds and declared that the heart rhythym/heart rate issue is NO LONGER AN ISSUE. Sammy's been staying in the 90s - both awake and asleep - and keeping a nice sinus rhythym. Clearly it's something they'll monitor over the coming months and years, but for now? We're good to go!
We got the okay from the nurse to scoop Sammy up and take him off the floor. So we're going to grab some lunch and take him outside into the courtyard for some much needed sunshine and fresh air - all together, as a family. Woo hoo!
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And we have achieved step-down!
We're in a room all by ourselves, which means we can pick up Sammy all we want, since he no longer has any lines in, just surface monitors. We can even take him for a walk around the floor if we want! Sammy's perked up considerably, and is happily playing with his rings and toys in his crib. If everything goes as smoothly as it has the past two days (knock on wood!), we could be home on Wednesday. Knock on wood.
And by the way, is this not the cutest kid in the world? Ok, I know, the universe, but I didn't want to seem cocky about it. ;-) Happy five-month birthday, little man. We love you more than anything.
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He's eyein' that door...
So Sammy is LINE FREE! They took out the arterial line and the atrial line just a few moments ago. I got to skip around the floor with him, showing him off to all the nurses and singing, "We're goin' for a walk! We're goin' for a walk!"
He's still got the pacer wires in, and will when we go to the step-down floor - WHICH SHOULD BE TODAY! His heartrate stayed in the 90s last night... now, in all fairness, the kid woke up every two hours screaming his sweet little head off, so he never really got into a deep sleep, but they'll continue to monitor things in step-down anyway.
Because, oh yeah - did I tell you? - we should be going to step-down today.
Keep those prayers and wood-knockin' a'coming. It's doing good things!
(Edited: The head cardiologist just came in to take a look at him and to tell us - TO THE FLOOR WE GO!!!!)
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So we're still trucking along. His heartrate is staying in the 70-80-90 range, which is making us all happy. I asked his cardiologist - if we didn't have the heartrate concern - based on his recovery from the Glenn procedure alone, would we be in step-down by now? He said we would be, which means that he's recovered nicely from the surgery. Yay!
His cardiologist also said that he wouldn't do a pacemaker unless it was absolutely, absolutely necessary, and that he'd rather watch him for a while to make sure the heartrate wasn't going to be an issue. Apparently, once someone's got a pacer in, it's pretty much a pacer-for-life deal, so he doesn't take a decision like this lightly. His surgeon agrees... so while we're not out of the pacemaker woods yet, we're a few steps back from having one put in than we were a day or two ago. Yay #2!
AND... if Sammy continues with these same numbers through the night and early morning, we could be moved to step-down tomorrow evening. Yay #3!!!
AND... in a bit of normalcy, Sammy had a complete blowout with some of the nastiest, nastiest poop. While I was holding him. BLECH. So he got a bath, which was much needed. We also got to hold him quite a bit today, which was really, really nice. He's talking a bit more now, too - working his way back to our little boy.
Knock on wood. Again, for good luck. And again for not tempting the fates by wishing for good luck. Hell, just spend the next few minutes knocking on wood, okay? Thanks. :-)
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Hi guys.
Sammy's still hanging in there. He had a few fits last night where he's clearly VERY unhappy, which is uncharacteristic for him, but in all fairness, the kid just had open heart surgery not even five days ago. On the other hand, we've had a lot more playtime out of him, and a lot more smiling, too. High and lows - but they're his highs and lows - not morphine's, not any other medication's... alllll Sammy.
They stopped the isuprel, which was keeping his lungs from spasming and keeping his heartrate elevated. They also took him off the pacer, so his heartrate now is all his own. The electrophysiologist came in to look him over this morning and started tossing around the real possibility of a pacemaker, at which point the head cardiologist (whom we LOVELOVELOVE) popped his head in and said, "Sammy will tell us what he needs." Even Sammy's surgeon said that while being in the 60s isn't optimal, he's fine with it as long as it only happens when he's sleeping. The good thing? So far, he's staying in the 80s & 90s - even while asleep!
Our feeling is this - if he stays in the 80s & 90s (even if he occasionally slips into the 70s while he's sleeping), they'll probably keep him in the CICU for another day for observation. Our hope is to be moved to the floor by Tuesday if they're happy with his heartrate and we have no other complications presenting themselves. (Knock on wood. Everyone. Now. ;-)) Though, we've learned to take things day by day - so our goal is to have another uneventful day like yesterday, upping his feeds, playing a little bit, and keeping those heartrates nice and happy in the 80s, 90s - and dare I even hope for it? - 100s.
I apologize for not returning emails/phone calls. All my energy is really wrapped up in Sammy right now, and I really don't like leaving his room all that often (we can't use cellphones here). Thanks for understanding.
Edited: He's in a deep sleep nap, and hitting high 60s. :-(
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Today was nice and uneventful. (Knock on wood.) His blood pressure is doing well on its own, his headaches have diminished greatly, and tomorrow they're going to wean him off the pacemaker to see how his heart does on his own. Otherwise, there were naps, visits with family & friends, bottles, some Princess Bride, some teething - and even a few smiles. :-)
Here's to an equally as uneventful night!
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I woke up this morning to the munchkin staring at SportsCenter. He threw a hissy fit when I moved the tv, too!
He had a good night (knock on wood). He got some more morphine around 4, but hasn't had any since. His blood pressures are still low (yay! though we'll see what happens when they wean him off the isuprel) and he's holding high 70s sats without supplemental oxygen. His surgeon came by, and the general consensus seems to be that his episode last night was "impressive" - he talked about how ill Sammy got & how fast that happened - and then how fast he bounced back. He also said that they don't usually see bronchial spasms like that in kids post-Glenn, so he's not sure what precipitated it.
Sammy coughed up some nastiness this morning, which is just what we want. Get that gunk out of his lungs! He also took some water by bottle - we couldn't figure out what the fussiness was, and it turned out he just wanted something to eat! Yay! He was playing a bit and even smiled his huge grin. He's napping now on just Tylenol - the lower blood pressure means less pressure in his head when he freaks out, which means his headache doesn't go through the roof, causing more freak out and an awful cycle. This is happy.
So today - we want uneventful. Lots of coughing and gunk-releasing. Stable blood pressures and good heartrate when they take him off the pacemaker (otherwise talk of putting in a pacemaker picks up a bit). Uneventful. So send some boring, smiley, playing-with-the-rattle vibes our way if you can. Thanks. :-)
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Today didn't go as smoothly as we had hoped. Sammy is still in a LOT of pain, and we've had to give him a few doses of morphine. His blood pressure goes through the roof when he gets upset (which, unfortunately, is pretty much whenever he's awake) and he's VERY hard to settle.
We did get to hold him today, though, which was wonderful. He calmed down in my arms and I sat with him for over an hour. They took out his chest tube and cath earlier today, but he's still got the arterial line in. They weaned him off the pacer with the understanding that his heart rate will probably be in the 50s-60s, but kept it on so that should he drop lower than that, it'll kick on and bring him back up. They're keeping a close eye on it, and while it's a "distance out there", the future possibility of a pacemaker has been discussed. For now, though, they'd like him to stay stable in the 60s-70s - and if he does, I think they'll just keep an eye on him over the next few months to make sure his body can handle a low heartrate.
We're still in the CICU, and I wouldn't be surprised if they kept us tomorrow night too. He's still so uncomfortable. They've switched him from morphine to codeine, and weaned him off the IV meds for his blood pressure & started him on oral captopril. After the codeine, he started playing a little bit with his rattle, and he's taken a few more ounces of food by bottle, too.
We're doing okay. It's been a long few days. I'm hoping Sammy has a real turnaround and starts feeling better soon, because those screams, those sad eyes, that cry - and not being able to help him - is really breaking my heart. I just want my little baby to feel better again.
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He's awake!
Of course, he's awake and in significant amounts of pain, which causes him to scream, which causes even MORE blood to rush to his head, which is what's causing a lot of the pain in the first place, which causes him to scream more, which causes his blood pressure to go through the roof... see a problem here?
So he's on little mini-shots of morphine - just enough to take the edge off. The night started out rough with a couple of these screaming episodes, but then he WOKE UP around 5 - eyes wide open - and SMILED at me. His eyes were the clearest we've seen, and he was looking around, taking it all in. He cried for a little bit, but we sat him up and I cradled him in my arm (the surgery redirects the blood flow to the head, so sitting him up helps to drain some of the pressure). He is PINK - the week or so before the surgery, he was getting progressively bluer. But nope - he's a dark pink all over - and man, he turns PURPLE when he screams. Before this there was very little change in his coloring, even during a hissy fit, so this is strange to see.
I made an exception to the no-TV rule we like to think we follow but never really do, and he watched Breakfast with Big Brown Bear (or whatever the hell that show is), ate about an ounce & a half, read some of Pajama Time with me, and then went back to sleep.
He woke up with the fuss-fit again, so more morphine and he's dozing. His chest tube is scheduled to come out today, along with the Foley cath and possibly another one of his lines (I'm not sure which one it is). They're still concerned about his heartrate - under the pacemaker, he's only pushing low 70s while he's awake. The hope is that once more fluid drains from around his heart and his body settles into his new circulation, so will his heartrate. So we'll see.
Please, if you have a moment, pray/meditate/send positive thoughts that his heartrate heals to a better, higher number on its own and that his blood pressure comes down a bit and stays there. We'll update if/when things change today, or else we'll post something later on tonight. My guess is that we'll be spending another night in the CICU - which is fine with me. I want him all better before they send us off.
As always, thanks for your love and support.
(P.S. There are a few more post-op pictures on flickr - we're still trying to decide whether or not to put up the immediate post-op pictures. They're not as rough as the post-Norwood pics, since his chest is closed, but they're still kind of hard to see.)
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So today didn't go quite as planned.
Something happened this morning - Sammy had an arrhythmia, and it concerned the staff. They weren't sure if it was a reaction to the morphine, if he had gotten too riled up through the sedation or what... but toss in that his blood pressure was ridiculously high for a good while and the fact that he was still retaining too much fluid, and it was a bit of a rough time. I'm still on edge and haven't been able to come down from it.
He's still a bit sedated, still asleep most of the time - waking only a few minutes at a time, uncomfortable and quite out of it. They upped the diuretics and he's been peeing like a champ. He looks much more like himself. We're hearing that he's had a good turnaround - 180° from this morning! Our surgeon just assured me that he looks good. That makes me feel a bit better.
One concern we're having - his heart rate is really low. He's always been on the low side - he should be up around 100, at least, and resting now, he's dropping into the low 60s, high 50s. (At home he would hover in the 70s when he was asleep, and it never quite sat right with me.) They had pacemaker wires in, as a normal post-surgery precaution, so they hooked him up and they're keeping him at 100. (It was wild watching his heart rate on the monitor adjust to whatever the doctor twisted the little knob to. Want 85? Here you go! Very, very weird.) The surgeon said he didn't think we'd need to do a pacemaker long-term (knock on wood), but that he wanted the heart rate specialists to come by anyway and do some tests.
Anyway, he's still got his drainage tubes in, obviously the pacemaker wires - but the good thing is that he's off the oxygen and holding 80s on his own. (Remember - most of us have oxygen saturations at or about 100. He was dipping into the mid-high 60s pre-Glenn.) His blood pressure is coming down and when he does wake up, his eyes aren't as glassy. They last gave him a touch of morphine around 4pm when they took out his central (jugular) line, so he's on Tylenol for pain. He's taken a little bit by bottle, but we're still waiting for him to wake up to really start to eat. We were told 1-2 nights in the CICU, but I think we're looking at 3.
I'm exhausted. It's a different exhausted than I was waiting for the surgery. This is a bit more of a rollercoaster - I want everything to automatically be okay post-op, and that's not how things work. There are little kinks and concerns, and I walk around on edge using all that energy watching his numbers and asking the doctors and nurses all sorts of questions, just so I know he's okay. I think I'll be better when he's awake and a little more himself.
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Extubated!!!!
Jay stayed with him last night and I stayed at the hotel - the first night in months that I didn't have the surgery hanging over me. I was so exhausted, I slept through Jay's phone call at midnight to say goodnight - and I had the phone right next to my head!
Jay called around 6 this morning to tell me that they had extubated him. When I got here, I was able to see that sweet little face! He's starting to fuss more, though they've got him on morphine and tylenol - last night they gave him , chloral hydrate which should have lasted about four hours. Him? Lasted two. He's fighting the sedation, just like last time. :-) He's bringing his hands to his mouth - a clear sign that he's awake enough to be hungry! Our nurse, Taury (whom we ADORE - we had her last time), said we could try to give him some water around 10. Whoo hoo!
They expect to remove his lines (yay, yay, yay - I HATE them), pacemaker wires and the drainage tube from his chest sometime today. At that point, he'll be left with his IVs - one is his hand, one in his foot. He's still puffy, but not nearly as swollen as yesterday.
(And... I just overheard that we're headed to a private room - still in the CICU, but we'll have a door!)
His blood pressure is still really high, and since this surgery redirected the blood flow to the top half of his body, Jay said he turns purple when he really fusses. They increased the nipride, but his body needs some time to adjust to the difference in pressure. He'll go home on another medication to help with that - most likely captopril. (He's currently on baby aspirin, lasix and zantac at home.)
We'll keep updating as things progress, but we're hoping the next few days are pretty quiet, just getting him comfortable, awake and back to normal.
As always, thank you so much for your support. Your comments, thoughts, prayers and love truly do carry us through this all.
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Ok, he's out - and we got to see him!
He's wicked puffy, and he's still sedated, lots of lines (central & arterial - which I HATE - it's a line in his neck), on the ventilator, one drainage tube - but his chest is closed and his numbers are right where they want them to be. The plan is to let him wake up gradually on his own during the night, see how he breathes over the ventilator and if he does well, extubate him hopefully by morning. Once he's awake, breathing and they're okay with it, he can eat (considering he hasn't eaten since 5:30 am today, I imagine he's going to be pretty grumpy). The lines should be out tomorrow as well. If all goes well, we could be on the step-down floor in the next few days.
Thanks for your thoughts, love and prayers. Keep 'em coming - we're not out of the woods yet, and seriously - I truly believe all that positive energy has really helped him. Thank you.
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Updated 2:20pm: They gave Sammy a cocktail of mind-numbing drugs around 1:30 - some tylenol, versed & ketamine. He was in a nice dopey state when they took him from us. We, on the other hand, weren't nearly as good. I didn't pass out, though, I'll give myself that much. I definitely came close a few times.
We'll get updates as things go along - we got the first just a few minutes ago to let us know the surgery went underway at 2:15.
I'm not quite sure what to do with myself while we wait.
Updated 3:15 pm: They just called with another update. His chest is open and he's on bypass. They're going to start the repair... next update in about hour and a half.
Thanks for all your thoughts and prayers.
Updated 5:35 pm: Us again.
Two hours without an update and I was on the verge of a breakdown. Came back over to ask the nurse to check in. They're warming him up to take him off bypass.
Hopefully we'll be able to see him by 8... that's my hope.
Updated 6:00pm: Off bypass!
They're closing his chest now, and the surgeon will be out to see us soon. After they're done with him here, they'll send him up to the CICU. The nurses take about an hour to get him settled in, and then we can see him.
I still feel like I'm going to either pass out or throw up, but at least I feel a little reenergized. I thought I would have a hard time with seeing Sammy with all the lines, IVs and monitors, but now I just want to see him and know he's okay. The rest seems manageable now. He'll be intubated (on the ventilator) and sedated for a while still, but I will be able to kiss those toes and those lips. I'll take that right now.
We're sitting in the inpatient admitting waiting room :-(
we were bumped to the second case of the day which means that we're waiting for the first surgery to finish -- waiting is definitely NOT what we need right now.
Sammy is fighting sleep and hunger pains -- he hasn't had anything real to eat since 5:30am. Mommy and Daddy just are -- numb, tired, on auto-pilot.
We'll update after he goes in.
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Pre-op went okay. Sammy did fantastic with the xray, smiling and flirting like a champ with the nurse. The bloodwork was a completely different story, and it was just as awful for us as it was for him. That scream, that cry - makes me, on such a primitive level, want to seriously hurt whomever is causing my baby to scream like that. I think Jay might have claw marks where I dug my fingers into him because I couldn't make them stop. It was awful.
Jay was awesome enough to go through the consents without me. Essentially, he got to listen to the surgical fellow explain just what it is they're going to do to Sammy, and then sign a paper saying that we agree to let them. If I had had to stay, I think I would have passed out or thrown up or ended up curled up in a corner, rocking back and forth. I'm afraid I've gotten a bit of a reputation with the doctors for being a nervous, anxiety-filled blubbery mess.
Anyway, we're in the hotel, Sammy's sleeping, we ordered room service and the glass of wine is starting to kick in. They bumped him from first case tomorrow to second, which means we have to bring him in for 10. We'll hopefully be able to see him by 5-ish. I've never been away from him for that long. I'm hoping I'll be able to come back here and curl up in a little ball in bed, sleeping off the anxiety and waiting for the phone calls to come in from the nurse, letting us know he made it through each stage okay.
I go back and forth between acceptance, denial and plain old freaking out. Part of me really wishes denial would just take over and create this perfect little bubble around me, protecting me until he's out and I can hold him and know he's okay. What gets me the worst? This sweet, sweet baby has no idea what's in store for him tomorrow. He's sleeping peacefully while we're nervous wrecks, oblivious to what's about to happen. It makes me sick thinking about it.
I want to take him and run very, very far away with him. I know this is what's best, what he needs to live, that this will make him better. But it goes against every cell, every fiber of my being, to willingly give him to the doctors tomorrow morning.
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We leave first thing in the morning for the hospital. We have pre-op tomorrow - paperwork, meeting with the surgeon, xray, bloodwork - and then Sammy's scheduled to be the first case Wednesday morning.
For those of you unfamiliar with what's going on - Sammy was born with a group of heart defects that places him somewhere in-between Hypoplastic Left Heart Syndrome (HLHS) and Double-Outlet Right Ventricle (DORV). (His official list is mitral atresia, hypoplastic left ventricle, coarcation of the aorta, atrial septal defect (ASD) and a large ventricular septal defect (VSD).) He had his first surgery, the Norwood, at 4 days old; this Wednesday, he'll have the second of three surgeries. This surgery is called the Glenn; there's a good explanation of it here.
Please keep Sammy and his surgeon, nurses and doctors in your thoughts and prayers over the next few days. We'll update the best we can as often as we can. Thanks.
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