Friday, March 31, 2006

Little man is looking good - he's been taken off the antibiotics, and he's now on AmBisone and Diflucan to fight the yeast. He had a fever earlier, which they treated with Tylenol, and it didn't return after that, however, but they ran cultures on everything to check for infection. Obviously, since they're taking him off so many of the antibiotics, they don't feel that there's one to worry about, and fever is a side effect of the AmBisone.

His profusion and color still look great, O2 levels have been great, except for one episode earlier this morning, which was settled by some chest PTs and suctioning of the vent tube.

The incision in his belly looks good - a nice healthy pink with no apparent infection. The colostomy site looks healthy. The chest tubes are still draining quite a bit, but better out than in. There doesn't seem to be any residual bleeding from the perforated lung. He was "dry" and wasn't having much urine output, so they are giving him 25% albumen. That seems to be working well. They're watching his urine output... Well, they always have been, urine output seems to be an indicator for many different problems - we tease that CVRU runs on pee - but right now, being on IV AmBisone poses the risk of renal problems, so they're keeping up with it for that right now. So long as the albumen causes higher urinary output, there's no reason to suspect kidney damage.

He's still pretty zooted, but he's comfortable and doing really well, and does wake up and look around a little - as much as one can when they're stoned on Morphine and Versed, lol. There hasn't been any mention of extubation yet, but I'm sure that will be a few more days because of the punctured lung.

Shanda has him again tonight - but then she's off for SIX days! Hopefully this weekend Sharron will be on and get him, she hasn't had him in like 3 weeks. Anyway, last night while Shanda was on, she took his cath lab bear (kids get a tedy bear every time they have a heart cath - he has 3 so far) and she took his ribbon off and turned it into a headband, rolled up the sleeves on his little t-shirt, made him a pack of marlboros and folded them into his sleeve, put those 1980s holes in his shirt and gave him a tattoo - and says it's his "tough" bear. Perfect for my tough little guy. Unfortunately, he looks more like a Flash Dance bear lol! We thought maybe it was the headband, so we took it off and then he looked like a homeless bear, lmao... too funny. She said one of the nurses told her not to do the holes in his shirt 'cuz we might get mad. HA! Whatever nurse said that obviously never took care of Nova! We love it! It's right along the lines of the Easy Button.

So, he had a good day, that's 2 in a row! Unfortunately, I forgot the camera today :|

posted by Erin @ 12:59 AM   2 comments

Wednesday, March 29, 2006

These are 2 pics from right after the surgery. He looks so so so so good. I'm amazed by just how much he's been through, and how hard he's fighting, and how well he's suddenly doing. His passed out drugged up little self is the absolute most beautiful thing I've ever seen. With the exception of the yeast infection that we're still fighting, everything about him looks great. The magic numbers are all but perfect. He is on a little bit of Dopamine, but only 3 mcg, and that's seriously nothing. It was at 10mcg 2 days ago. He's pink and warm and perfect.

They changed the antifungal he was on from Diflucan to something else, and I can't remember what it's called, but the Infectious Disease folks feel like it's a better bet than the Diflucan. I don't understand, but they're experts at these things, so I'm not arguing.

We came home earlier, after seeing him a few times because he's doing so well (better than he has in weeks actually) that I felt OK with coming home and passing out even though the cath was just a few hours ago - I've been up since 7:30 am YESTERDAY. I'm exhausted, and overjoyed and amazed and tired. God I'm tired. But... LOST is on, so I'm going to prop my eyelids open with toothpicks and see if I can watch it. I missed it last week dag nab it. I'll probably fall asleep during tonight's episode though lol.

Shanda is his nurse again tonight. Have I mentioned that I love her? I called to check on Nova, but I also called because I wanted to hear as much relief and happiness in her voice tonight as I heard concern this morning.

She loves him, and it shows. They all do really. He's becoming the CVRU Mascot lol.

SUPER! (god how I wish I'd have been there when Dr. Watts said that!

posted by Erin @ 8:56 PM   4 comments

Dr. Stern just came in to talk to us. The artery that they needed to stretch was .4mm - that's like a thread. They managed to open it up to about 2.5mm. They didn't stent it because of the infection, but he said they probably will in the future. They did perforate the lung, but that's a small thing to happen when you take into consideration what could have happened. The worst that could happen from that, as far as my uneducated ass can figure, would be a collapsed lung, only Nova already has chest tubes, so that can't happen. He tolerated the procedure well, and is doing fine. He's in recovery but we haven't been able to see him yet. I figure it'll probably be an hour before we can.

Dr. Watts saw Scott sitting in the waiting room while I was on the phone telling Ma that he's ok, and came in to talk to him. He hadn't seen Dr. Stern yet and asked Scott if they were still in the OR. When Scott told him what Dr. Stern said, his response was, "Super!"

I wish I'd have seen that, lol I want to see Dr. Watts get excited like that!

So, I'm so relieved that my chest hurts, and I thought I was going to hurl for a few minutes. But I'm finally breathing again, my heart is beating again, and now I'm impatient as hell to get up there and see him.

I'm sure I'll have more to tell when we've seen him and talked to his nurse, so I'll post more then.

Thank you all for your prayers and thoughts and positive energies and candles and whatever else you've done on his behalf! I love you all!

posted by Erin @ 1:23 PM   4 comments

Waiting... still waiting. We got here (in the waiting room) just before 7am I guess, but the procedure didn't start until 9. We were told it would start at 7:30. So I went to ask the patient rep at noon, thinking we might be getting close to being done. Ha! Nope, frayed knot.

It has been 3 hours now, and they said would be 3 - 4 hours at the least. We'll see how long it actually takes. I'll let ya's know.

posted by Erin @ 12:23 PM   1 comments

Well, we saw him at 6am, and Shanda let us do all sorts of stuff. I helped give him his bath, and got to look at the incision in his stomach, and helped change his dressings around his chest tube, and then I got to pick him up while she changed the sheets! It isn't exactly like holding him, but it was the most I've gotten in 5 weeks, and I was thrilled! And scared and shaking lol, but that's another story. When Dianne came in for her shift, she took a picture of all of us. I thought that was so nice!

Shanda said that he had a really good night. His fluid I/O was WAY in the negative and he's almost back to his normal non-swollen self. He opened his eyes and focused on us, and he didn't even get upset with us for all the stuff we did to him, and it really seemed like a lot of fussing and fidgeting.

Then Dr. Watts came in and reassured me again that "Today is the right day to do this." And Shanda agreed that it really is the right time, he's looking so much better in the last day or so, and he seemed ready to start getting better.

If there's a God, that's what will happen today. Somewhere in that dark periphery of my mind was this nagging worry that they let us do all of that, and took that picture just in case.

OK, I'm going to be totally rude in a public place and see if I can catch a quick nap sitting here. They said it'll be at least 3-4 hours in the cath lab, so it'll be a while before we know anything.

posted by Erin @ 8:30 AM   2 comments

Tuesday, March 28, 2006

Nova looks so much better today. The swelling went down SO much in the last 24 hours. He's off the Dopamine (did I already tell you guys that? I don't remember) No paralytics, still on Versed and Morphine, but he opened his eyes and looked at us tonight, and was moving around - and he's WARM! He has been soooo cold lately. Shanda let me take his temp (rectally lol) and let Scott put the Silvadene on his bed sores. (We had to wear rubber gloves, and yes, of course there were the expected jokes.) I really loved being able to do even something that small - I do miss being his Mommy. It's a proven scientific/psychological fact that during extended hospital stays, parents start to wonder if they'll be able to take care of their children when they come home - that they get this thought that, "Hey, it takes teams of people to provide what he needs, how am I ever going to be able to do it on my own!?" I read about that weeks ago, and swore I wouldn't allow it to happen, but the truth is that it is happening. I'm afraid to move him, afraid to do anything but hold his hand and kiss him. So it was nice to be able to do something and see that he won't break if I move him. Hell Scott had to lift up his head and jostle him around to apply the Silvadene - I was impressed!

Anyway, they got the central line into the right side of his neck, and because his veins are clotted on both sides of the groin, they'll do the cath through that central line.

Dr. Stern will be doing his cath, he did his 2nd cath too. He came in and talked to us tonight while we were at the bedside. This cath is different than the 1st 2, and of course they have to go through the list of possible problems associated with the procedure. They always do that, but before this, it's mostly been the nurses that have delivered the speech, tonight Dr. Stern gave it. I don't know if he's always so grave, or if he's really as concerned as he sounded. See, this will be Nova's 3rd cath - the first 2 were a breeze, heart caths are common and mostly a breeze. Simple and everyday sort of stuff. But tomorrow's cath is different.

They're going to open up his pulmonary arteries on the right branch with a balloon - these are already much weaker than in a normal case because the surgery to "create" them was so recent, so there's a real possibility that they may tear when they stretch them. Dr. Stern said there's a 3 - 5 percent chance that that could happen. Seems small on paper, but there was only a 10-15 percent chance that Alexis wouldn't live through her surgery... Small numbers are huge when you're talking about the possibility of your child dying. Anyway, if that happens, it's entirely possible that Nova could bleed to death. "Catastrophic" was the word he used to describe that situation. He's also very concerned because there's another blood clot in the vein they'll be going through to do the cath. If it's dislodged, it could also cause serious damage and complications, or death.

He spoke slowly and clearly, with much concern in his voice and eyes when he said to me, "I feel I need to be honest with you about the possibilities here, and one of those possibilities is death."

Of course, I was terrified, still am. But without the cath, he can never get better. He has to have this done. Again I'm in the position of knowing that the thing that may save his life is also the thing that may very well kill him.

After we talked to Dr. Stern we went to the waiting room. He had left before we did, and when we came down the hall we saw him talking to Dr. Watts just a few feet from the waiting room. Dr. Watts amazes me. He's taken on God status for me - he has saved my son - he has righted what nature did wrong. He has performed surgery on arteries that are the size of hairs in many cases. I am in awe, and very nearly convinced that there should be a Church of Dr Watts, where I would be likely to worship, ok? The man is a miracle worker. BUT he's also very self-deprecating, and according to one of the nurses, the most pessimistic people of all time. He offers no false hope, accepts no thanks in return for saving hundreds of kids every year.

Whenever I talk to him, I leave scared, because he's so very honest (which is a good thing, really!) So when I saw them talking, I knew they were discussing Nova, and quite frankly, I hoped he didn't come talk to us at that moment, because I couldn't handle feeling any worse or being any more afraid than I already was. Of course, he came in. Of course, I, like a dumbass, asked for percentages. If it's 3% - 5% on the tearing, what is the chance of the clot dislodging?

And you know what he said? He said I can't let myself get caught up in the little numbers, that it would drive me crazy and overwhelm me. He's right, I was already overwhelmed. He said that if the artery tears, he'll be in there to repair it. He made sure we knew he's be there and would be taking care of Nova. Of course there are risks, but without the procedure, Nova will die anyway, and it's "the right time" to do it - he needs it, and he feels like it's a manageable situation.

Somehow, the man who has in the past been able to snatch away every crumb of hope in exchange for truth managed to make me feel better. Of course I'm scared shitless, my son might not live but he gave me the hope I so desperately needed, and trust me, if Dr. Watts offers hope, then there's hope to be had. He thinks Nova will come through this, and then be on the real road to recovery.

So the next time we visited, I asked what to expect him to look like afterwards. The answer was, "no one can really say, it's all in how well he does." Some kids tolerate it extremely well and have no down time. Others come out looking like they just came out of the first surgery - swollen, on lots of meds and needing a lot of support. I'm mentally preparing for the latter and hoping for the earlier. But then, Nova is already weak, and has proven that the easy way isn't the way he goes with.

So I'm asking you all to say an extra prayer tonight and tomorrow, light an extra candle, send some serious positive energy, however you do it. This is his crossroad.

I will try to remember to take the laptop so when he comes out of the cath lab and as the day goes on, I can update you - but I'm not making any promises.

posted by Erin @ 11:39 PM   2 comments

The first thing we do in the morning is call the nurse and check on Nova. We know if anything went wrong over night, they'd have called, but they work on the 'no news is good news' premise (thank god, the phone ringing scares me to death!) so we call in hopes of good news every morning. This morning we got it!

Apparently, the chest tubes made such an improvement that they're going to do the heart cath tomorrow!

He had a good night, with the trend continuing on the course it started last night. I didn't get any information on the latest cultures yet, so I can't say how the infection is doing but it must be improving if they feel like they'll be able to get a vein easily enough to do the cath.

Now, lemme tell ya, feeling good makes me nervous - it hasn't been 'safe' to feel this good lately, but shit I feel good this morning. For weeks we've gotten lots of bad news, and lots of more-of-the-same news, so good news is a surprise, which makes it even better... Does that even make sense? I'm feeling sort of giddy - which is really weird because when we first heard he needed the cath, it was bad news. Guess it's all about perspective eh?

Guess that "Big Daddy" lovin' did him a world of good!

(Later, I'll even explain the whole "Big Daddy" thing but right now, I'm going to have a celebratory cup of coffee with Big Daddy)

posted by Erin @ 9:18 AM   4 comments

Nova, getting some "Big Daddy" lovin'!

Well, they reinserted a couple of chest tubes to drain the fluid that showed up on CT Scan from his chest this afternoon. They did that at about 4:30 I think. At 6, they had drained 100 mls each. That's a total of nearly 7 ounces. That's a lot of fluid, especially for a little guy. But it made an immediate difference in his sats - they were higher and steadier than they had been for days. His blood pressure and heart rate went down a bit too - they'd been a little high. His fluid intake/output was finally in the negatives (for the first time in at least 3 days.) And it might have been just wishful thinking, but I think he looked just a little less swollen. It might havce been my imagination, I don't know. But I do know that his pulses were easier to find in his extremities, and his hands were nice and warm for a change. His feet are still cool, but not cold like before.

He's gone down from 10 to 4.5 on his Dopamine, and they'll continue to wean it down. He's off the Fentanyl - they put him on Morphine instead. And he only had to have the paralytic once today - it's been pretty constant for days now, so that was nice, to see him move around a little.

They fiddled with his antibiotics again, and called in the Infectious Disease docs, because they're experts at figuring out what infections are what, and how to best treat them. The fact that Nova only has one central line is really hindering their ability to treat him - not all meds are compatible, so some things just can't go in the same line as some others, so it's complicated.

We talked to Dr. Timmons today. He (and the nurse Ricardo) said that they think that getting that fluid off Nova's chest will be the first step in the right direction, and that this should really get us on the road to recovery. Dr. Timmons is so nice, and so willing to answer questions, and so friendly, and he smiles a LOT, which just feels good. Excellent bedside manner. He gets an A+ in my book.

A few weeks ago, the child beside Nova was 3 years old, his name was Aiden - he's the one we gave the Photocuddler to. Well, he went home a week or so ago, and we found out a couple days ago that he'd gotten an infection and had to go back into the hospital and have surgery again. Well, I can't legally be told where he was, so I had to wait until we ran into the parents, which we did finally last night. They're on a different floor than we are now, so they wait in a different waiting room. She told us we should come up there to wait, so tonight we did.

I adore her, and her husband is an absolute HOOT! I love them, and will probably spend more time with them. They had a hell of a scare with their little boy. She's so sweet, so compassionate about the other parent's situations. I just want to hug her lol.

Yeah, I've become quite the hugger lately. lol. Not normally how I am really, unless I really feel a connection you know? I guess I just really feel connected to all these people who've come into my life at this point.

Anyway, I need to go to bed. Lately sleep has decided that it only comes between 3am and 9am, and I've just GOT to get myself straightened out. So, goodnight folks.

posted by Erin @ 1:30 AM   0 comments

Monday, March 27, 2006

I have completely lost the ability to track time, but I know that one day, recently, it was 80 degrees. Then it went and turned spring, and turned cold. OK, not like frigid, but the lows have hit freezing, or close to it, on a couple of nights since that beautifully warm day. Today the high was something like 45. It wasn't too bad, as long as the wind didn't blow. But there were some pretty good gusts going on out there - and they cut right into you.

The good news is that they're calling for nice warm 70's and 80's at the end of the week. Now that's what I'm talkin' 'bout. I need it. Winter depresses me, the last 5 weeks of watching Nova fight for his life have sapped me, the news about Randy and how much I know Scott is hurting right now has really just been all I can take. I need something to feel good about - even if it is just the sun on my face.

I miss being happy.

The nurses, doctors and patient reps up at the hospital love us. We're always friendly, upbeat, smiling and laughing. It's starting to be work to keep all that up, you know. Oh the Easy Button is funny, hell, we had a blast with it - but it's just a distraction. You know how it is, when life gives you lemons, make lemonade, chin up, think positive...

I don't want to anymore. I just fucking want my son, whole and healthy and home.

I've been thinking a lot about Alexis lately. I try not to dwell, but christ, it's all right there. The bells and alarms, the smells... They tried to have us wait the other day in the waiting room around the corner from CVRU, where I held her after she died. You know, she'd be starting Kindergarten this fall. I can't believe it's been nearly 5 years.

When Nova went in to the hospital, I told myself that I wouldn't be paranoid because of Alexis' death - that I had to believe that he'd make it. I don't know if I did - especially that first day, maybe the first several. But once he made it through the first 48 hours, and as time has gone on, I think I've swung to the other end of the spectrum. With all the things that have gone wrong, I've found myself minimizing them in my mind. When I feel good, I question whether he's really doing ok, or if I'm just in denial. I'm afraid he's sicker than I'm willing to admit to myself.

Look at him, he looks like hell, he's been through hell, and we have a long way to go. I hold my breath wondering what the next complication is going to be, wishing the swelling would subside, the infection would clear, that he'd open his eyes and see us. The whole time we're up there I'm laughing and joking with the nurses, and somewhere in the periphery is this 'something' that I try to ignore.

I can't figure out if it's fear, or truth.

posted by Erin @ 2:17 AM   1 comments

Erin's version of the last picture of Nova. Frighteningly apt, isn't it?

The funny thing is, we call him Buddha Baby a lot, like, every night when I leave, I say, "Night night Buddha Baby. We'll be back tomorrow..."

Image posted without permission from

posted by Erin @ 12:20 AM   0 comments

Sunday, March 26, 2006

"That was easy!"

posted by Erin @ 8:03 PM   1 comments

So here we are again. I swear it would be easier to just move in to the hospital. We've been here so long that we fill in as temporary patient reps when she goes to lunch or takes families up to visit their patients. We know how to find pretty much any place that people need to get to - the people who are in this waiting room anyway. The only thing we don't do is answer the phones, and we'd do that too if it wasn't a HIPAA violation. Kory has even learned how to transfer calls to all the phones in the room, and he's privy to the security code on the supply closet. We're fixtures here. Joan and Michelle especially have become almost like family.

Anyway, we got here at noon, and went right up. The first report included the possibility of an abdominal abscess. They were waiting for the results of the CT Scan at that point. They'd come back by the 2 o'clock visit, and they showed no abscess, which is good news - but they did see a blood clot in the superior vena cava, so they'll put him on low dose blood thinners now.

They managed to get another IV line in, so they can administer the antibiotics without pushing in the Dopamine and raising his blood pressure and heart rate. That's a relief.
He's still very swollen, but that will be so until the infection clears. The CT Scan also showed quite a lot of fluid in his chest and abdominal cavities, but they think (hope) that will clear up on its own as he begins to heal from the infection, so hopefully they won't have to do any invasive procedures to fix that.

I took the "Easy" button in with me at noon. It's a hoot. When you push it, it says, "That was easy!" I took pictures of it in his bed, but I can't remember to bring the stupid cord for the camera so I can't upload it. Later I will. The nurse (Tiffany) thought it was pretty hysterical because last night the IV monitor/alarms were going crazy and she couldn't figure out why. She'd fix one and get it reset and the next one would go off, and she'd do it again, and another would go off. Since they all go in at the same place, it should be all, or none, not one at a time, so she was going crazy trying to find the problem. She finally did, but in the meantime, we laughed at her and gave her hell of course, because that's what we do. She said next time, she'll just push the Easy Button and be done with it ;)

Unfortunately, it's made to sit on a desk top, not hang on a crib, so I'll have to figure out a way to get it to hang on his crib - maybe some double-sided sticky tape and a magnet.

posted by Erin @ 3:18 PM   1 comments

If Nova were green, this would pretty much be him :)
Thanks Ang!

posted by Erin @ 12:21 AM   1 comments

I'm going to Staples tomorrow (hopefully we'll make it tomorrow) to get an Easy button.

You see, the whole time Nova's been in the hospital, we've tried to stay light-hearted and joke about things. We have said that Nova just wasn't going to do this the easy way, and tried to joke about it.

The other day, when things were not looking all that great, I had this brilliant idea. I was going to make an easy button with one of those push-lights, and hang it on his crib, as a joke. I shared this idea with Ang, and she pointed me to Staples, where, AHA! you can BUY an Easy Button for $4.99, and a dollar of that goes to the Boy's and Girl's club.

Yes, Nova needs an Easy Button, and the nurses will think that's a hoot.

posted by Erin @ 12:20 AM   1 comments

Saturday, March 25, 2006

Well, the car went for $44.34! That'll be put to good use for the Foundation! I'll be so glad to be able to pass it along.

Nova is doing pretty much the same as yesterday, and there really isn't anything more to add. He's still very swollen, and that won't change until the infection starts to clear up. He really looks like hell.

The swelling puts him at risk for more pressure wounds (bed sores) and he has two spots on the back of his head that look like they started to break down, but I pointed them out to the nurse yesterday and they've been trying not to turn his head in a position that would put pressure on that area.

His hands and feet stay very cold, and the O2 probes have a hard time picking up - again, a side effect of the infection - so they have the portable heater on him, and do a LOT of blood gas tests to be sure he's oxygenated enough. They wean him down on the ventilator when they can, but it was at 75 all day - yesterday it was at 37, so it's considerably higher today.

Basically, he looks like hell, but his body is putting all of it's energy into keeping the internal organs working. It's doing its job, as best it can. No big steps in either direction today, which is about as well as he can do right now.

I tell you what though, it's easy to get discouraged on days like this, when there's simply no improvement. I just keep reminding myself that at least he isn't any worse.

posted by Erin @ 10:01 PM   1 comments

Only 13 hours and 30 minutes 2 hours 30 seconds left on the Tony Stewart diecast auction!
All proceeds go to the Maeghan and Heidi Heart Foundation

posted by Erin @ 1:01 AM   0 comments

Zooted totally am I - ribbit.

posted by Erin @ 12:05 AM   4 comments

Friday, March 24, 2006

Well, the PICC line and the Central Line are essentially the same thing, HA! See, I'm not a total doofus...Well not all the time anyway. The basic difference is where the line enters the vein. Scott (the nurse today) explained it in detail, but I'm not typing all of that right now. Unfortunately, with all the fluid and the infection, they couldn't get one in at either attempt. They're having to manage with what they have, which is less than ideal because when they administer one drug, it pushes more of the Dopamine, which causes his blood pressure to rise.

Even with that, Nova is more stable today, not having to get so much of the paralytic, but still at the same dosages of Versed, Fentanyl and Dopamine. Basically, we're just sort of hanging out until the infection starts to clear up. Once the infection is more under control, the vessels will be more accessible and they'll be able to do the PICC/Central line(s) and do the heart cath too. I guess if they can't find a good vein for an IV line, they won't be able to find one to do the cath either.

He's still pretty swollen, but starting to 'dry up' a little now that the fluid is being drawn out of the tissues and into the vascular system - now he can pee it out.

God, the amount of talking I do about bodily fluids and functions!

Anyway, the swelling in his head is making his ears stick out now, and he looks like a mix between Yoda and a frog... I have pictures, but I can't upload pictures from here (we're at the hospital.) I'll upload them when we get home.

And, as of the last time I checked, the Tony Stewart diecast is up to $44, with only 19+ hours left!

posted by Erin @ 7:14 PM   0 comments

**post-dating this to keep it up top - new posts below**
Thank you Kriss for bidding!

Any Tony Stewart fans out there?

Several days ago, we started an ebay auction, with the intention of donating the proceeds to The Maeghan and Heidi Heart Foundation. It's a 1:24 Diecast car made by Action. It's the 1999 Habitat for Humanity Pontiac - autographed by Tony Stewart. So if any of my readers are interested in NASCAR, NASCAR memorabilia, or Tony Stewart collectables, please go take a look!

I've seen it listed for several hundred on other sites, and I'm hoping that we can make a pretty good sized donation from this sale! There are 3 days left on the auction, and we've only gotten one bid so far, but whatever it sells for, The Foundation will get it.

AND I got the first donation for the sock fund this morning! It wasn't a huge donation, but it was the entire balance of the donor's Paypal account, and I'm very grateful for it!

posted by Erin @ 2:17 PM   0 comments

The autographed Tony Stewart car we're selling for The Maeghan and Heidi Foundation is up to $41! YAY! And there are still a couple of days left on the auction. . . All the fun usually happens in the last couple of hours, so I'm hoping to see this work out to be a pretty good sized donation, which makes me extremely happy, it's a great cause.

OK, so, on to today's installment of our Nova rollercoaster ride:

Yesterday sucked. Today, not quite so much. And you all know that Nova's back to being totally zonked and paralyzed to keep his blood pressure and O2 sats on an even keel - and that's still true today. But today he was nice and steady, no major bad spots or anything today, which is good, and what's better is that apparently the cultures came back and the Diflucan is effective on the strain of yeast infection that he has, which is excellent news. I don't know exactly what happens if they find out that the Diflucan doesn't work on the strain present, and I don't want to know. I mean, the infection is still obviously a concern, but yesterday I was in Mommy-freak-out mode. Today I'm feeling a little better. It still puts off the heart cath and the extubation until some unnamed date, but I can (keep trying to) be patient.

We were talking to Shonda (sp?) which is Nova's nurse tonight, and she was telling us that she knew of another child who was on the vent for 2 months, and came off successfully, so I feel a little better about the extended vent dependency. That's not saying it's great, and I'm still concerned, but at least I know that it can be done.

The nurses there have a way of doing that... they're so capable, so good at what they do, and so personable and friendly and caring. They know that the parents are scared to death, and they know how to make you feel better. Plus, they seem to understand my need for information - I want to know (and understand) everything. I'd think it would drive them insane, trying to explain things to the parents, but they're wonderful about it. So is Dr. Watts, Dr. Timmons, and especially Dr. Bailey. These are special people that choose to do this for a living, I'm telling you. Well, all but that damned Dr. Young. I'm still hoping he gets a couple of flat tires.

So, now I'm going to see if Blogger is going to let me upload some pictures. It's had a wad up it's ass all day, so we'll see... Then I'm off to bed because it's supposed to rain tomorrow, which means Scott might be off, so I might get to go to the hospital early tomorrow, so I should probably go to bed before 3am eh?

Ok, this is from yesterday - swollen and out like a light.

This one is from the 6 o'clock visit. He's actually more swollen, still zonked.

And this one is from 8 o'clock. Figured I'd take it from the opposite side of the bed, for a little variety you know - plus in this one you get an excellent view of the bag'o'spinach there. Oh c'mon it does look like spinach!

posted by Erin @ 12:06 AM   4 comments

Wednesday, March 22, 2006

Nova has a systemic yeast (that's what causes thrush) infection. It's in his blood. Any infection is a big deal - but yeast is difficult to beat. He's on Diflucan, but they're very concerned about how hard it is to get rid of. His blood pressure has been crazy all day, dropping and spiking, dropping and spiking - normal systolic pressure is between 80-85, during our visit at 6pm, it was 58 one time, 143 another.) His oxygen level at one point today was in the 30's (99-100 is normal) and they had to sedate, paralyze and bag him to get them back up because he had gotten so agitated that they couldn't calm him any other way. The nurse said he was completely blue. Now he's sedated and paralyzed all the time, but it's the only way they can keep his blood pressure and O2 sats on an even keel and at acceptable levels.

They need to run another peripheral IV and another PICC line, but don't really want to do the PICC line while he has the yeast infection because the yeast can/will colonize in it.

Needless to say, it was a hard day, a damn rough one, and we're back to holding our breath. He's taken so many steps backwards. We can't get him off the vent till they can do the cath, they can't do the cath while he's got the yeast infection, and they can't say how long the yeast infection is going to take to clear up. The longer he's on the ventilator, the harder it is to come off of it - the longer he's sedated and paralyzed the less breathing he does on his own. He's on more of all the blood pressure meds, more fentanyl... I won't say we're at square one, because the heart surgery s done, but I will say square 2 or 3, and at a standstill. The problem with that is that as long as we're at a standstill, he's at risk for more complications, more infections, more problems with his lungs...

Things are bad enough that they had to talk me out of staying tonight. The nurse said they didn't anticipate any emergencies coming up. I suppose that's good - but really all it means is that it's a chronic problem, not an acute one.

They told us originally that we should expect to be there for 3 - 6 weeks. We've been there for 4 1/2 now. There's no way we'll be home in a week and a half. They're still saying something like another month in CVRU and that's only if everything goes right from here on out.

posted by Erin @ 11:52 PM   1 comments

A couple of pictures from the last couple of days, since Blogger is being kind enough to allow me to upload them without freezing my whole system.

This picture is from Monday, shortly after the surgery. He's completely zonked.

This is from yesterday (Tuesday) You can see how much more swollen he looks.

And this picture of the colostomy is cuz I'm a little gross ;)

I called the hospital just now because the doctors were at the bedside earlier. Seems Nova got pretty agitated around 5am and they basically had to knock him out to calm him down because when he gets crying really hard his oxygen levels drop.

They also did an echocardiogram that shows that the left branch of his pulmonary artery is definitely too narrow, so they'll have to do that heart cath for sure. That will be next Monday, as far as I know so far.

His white blood count is up, which means there IS an infection somewhere, but damn if I can figure out how when he's on so many antibiotics. They're switching his antibiotics and adding some new ones and stuff to get a head start on that, even though they don't know exactly where the infection is right now.

They plan to remove the last chest tube today, and tomorrow they plan to run a new central line. He's still swollen, but the lasix drip is still running and he's peeing like a champ, and the echocardiogram showed that there are no problems with the vessels in his neck (sometimes those get blocked from the swelling and inactivity, which causes the head to become swollen, but the echo showed that that's not a problem) so that will start to go down soon.

And I think that's all for now.

posted by Erin @ 9:08 AM   2 comments

Eh. I'm tired. Even though it was a largely unexciting day in the medical world, I'm all outta juice.

He's good, about the same as yesterday, with the exception of some swelling. They turned off the lasix to make sure his kidneys can still function on their own - they do, but not well enough to get rid of the massive amounts of fluids they're pumping into him, so he's swollen - but they feel comfortable that there is, as of yet, no long term kidney damage, and he's back on lasix to get rid of the swelling.

Other than that, everything stands pretty much where it stood yesterday - lotsa antibiotics, still pretty doped up, but everything seems to be working well - as well as we can ask at this point anyway.

All major plans are still on hold until next week, though they're considering an echocardiogram to assess heart function and make sure that all still looks good. It's sort of a back-up plan to make sure nothing is happening in there between now and the expected heart cath, which has a tentative date of 3/27.

I took pictures of his colostomy yesterday, but I don't feel like fighting with my computer to get them up. I almost took one of it tonight, it was slap full of the greenest nastiest spinach-colored poop you've ever seen. Ha! Like you wanted to know that?

Oh, we had Jane again tonight. She was the nurse on duty when his incision needed fixing. She described the events leading up to that... apparently, it wasn't seepage that was the problem. Seepage tipped her off that something was up. The bandage was "wetter" on one end than the other so she took it off to look, and the incision was beginning to open. An hour later she checked it again, and there were bowels visible, outside of the incision, for the length of the 6" cut. THAT'S why it was such a big deal. No one had explained that to us before.

Yummy eh?

K, night night.

Baby socks ... ok? Please?

posted by Erin @ 12:18 AM   0 comments

Monday, March 20, 2006

I'll start this post with an interesting email I got today; It said just
"Call out Gouranga be happy!
Gouranga Gouranga Gouranga...
That which brings the highest happiness"
And nothing else. I don't know the sender, or how they got my email address. Nor did I have any clue what it was all about. So I did a search on Gouranga.

I was amused somehow, but extremely happy that it wasn't the longer chain letter version...

Anyway, then I decide to do a blog search on the sender, whose name I didn't recognize. Apparently "Neateye" has made some rounds in the blogosphere...

Well, regardless, I think I'll "call out Gouranga" for a while. I need some easy-to-come-by happiness today. "Why?" you ask... Well let me tell you:

This morning, like I said, we got a wake-up call from the hospital saying that they needed to take Nova back to the operating room in reference to his incision. Well, you can't exactly say no, and I'm afraid that I wasn't entirely sure of even why they needed to go in, or what they needed to do. All I knew for sure was that there was an opening in the incision that needed to be addressed because it was seeping.

I don't want to go into a huge detailed description, but basically, when they did the surgery, the went through the skin, the muscle, and the membrane that encloses the intestines. The body naturally sends extra fluid (via the lymphatic system) to any area that has been damaged. This fluid was accumulating between the muscle and the skin and the pressure it created caused the incision to open, and the fluid was then leaking out. The accumulation of fluid isn't normal, and so they wanted to see what was going on in there, drain the fluid, and repair the incision.

Basically, from what I understand, they opened him back up, cleaned the area, drained the fluid, and resutured the membrane and the muscle but not the skin. Then they put on this weird spongelike bandage which is covered by a sheet of clear tape-ish stuff that has a tube attached to it. Basically, it creates an air tight seal, and the fluid is now being suctioned off of the wound.

It sounds more complicated and serious than it is, but it does put off all conversation (for the umpteenth time) about extubation and/or heart catheterization - at least until NEXT WEEK. Nova has been intubated for 4 weeks today, and I'm really concerned about how hard it will be to get him off the vent. He was showing signs of a fever (though not actually running one yet) and needed some blood products to up his blood volume, and off the lasix - completely knocked out on narcotics, off the feedings, back on the dopamine, and recatheterized.

Despite all that, he was stable, and all his numbers looked pretty good. It just sort of puts us back at square one with his recovery, because now he has to spend a few days just recuperating, and they have to keep him more sedated for the pain. They had just started to really wean him off the fentanyl and versed from the last surgery, and now it's all back up again. They had begun to wean him off the vent pressures, now that's back up again.

The poor guy can't catch a break. And I'm exasperated beyond words. Part of me wants to be angry at the doctors, because that part of me wants to believe that someone is doing something wrong. But the truth is, this shit just happens. His body was so overtaxed from the heart surgery and the possible heart/lung issues that still have to be addressed that it doesn't have the energy to heal or maintain itself the way it normally would - so other things start to go wrong.

I can't take anything else going wrong. I need things to start going right. And damn it, I know that the things that have happened could have been worse, that we're lucky to have nurses who are so caring and vigilant, but damn, you know? He's been through so much, and it's just one thing after another, and he's been through enough.

And to top it off, we got to the hospital and immediately checked into the waiting room. There was some new chick I've never seen before, so I made sure we were on the master list, that she had our names, and we got a beeper so if we needed to leave the waiting room, they could get ahold of us if they needed to. This is their system, and it normally works very very well. So we sat a while, and decided we'd get some breakfast just before 10. We ate and came back and sat and waited and waited and waited... at 11:50 I went up to ask if they'd heard anything. By that time, I'm thinking he'd been in an awful long time for what they said was a simple procedure. There was a crowd at the desk, so I just called upstairs and asked Nova's nurse whether he was out yet.
"Oh, yes ma'am, he's been back here since about 10 o'clock. We called the waiting rooms on the 3rd floor, the 6th floor, even the surgeon went down looking for you. We expected you to be in here at 10!"


When I asked at the desk, the new chick asked me who I was, who my patient was (hullo!?!?!) and what doctor would have been looking for me. I told them that Dr. Bambini had said he'd been to the waiting room looking for me, and that the nurse had called down... so why wasn't I paged?

According to her, no one ever called or came in asking for me. Bullshit. Doctors and nurses don't lie about looking for the family, and they ALWAYS call you up as soon as the patient is out of recovery and back in their bed. For God's sake, Dr. Bambini even called my house looking for me and talked to my mother, so I KNOW that he tried to find me.

So even though Nova was done with surgery before 10, and I could have SEEN him at 10, we didn't see him until noon. Talk about pissed, oh man was I pissed. Hell, I'm STILL pissed.

posted by Erin @ 8:59 PM   1 comments

Well, we got another hospital wake-up-call at 6:50 this morning, another unexpected trip to the OR. Apparently the wound care specialist wasn't happy with the way his abdominal incision was looking - it was 'leaking' but I couldn't quite get what it was leaking. I know they didn't think it was infected, and it seems like basically the problem was that they needed to flush it out and add a stitch or two. Not a big deal, as long as it isn't an infection, and with all the antibiotics he's on, I can't imagine him getting an infection.

It's a lousy way to start the day, I'll tell you that. And it sure as hell feels like it's just one thing after another. Poor little guy has been through hell. I just wish we'd stop having complications and side issues, and get to the healing-and-going-home part of this.

Now - go buy baby socks and send them dag nab it! There's babies up there with cold feet!

posted by Erin @ 11:03 AM   0 comments

Haha I forgot the story! I told you to remind me!

So the day he had the colostomy surgery, I was pretty well freaked out. I mean, you expect heart issues, follow up heart caths, wonky pressures or whatnot, but you don't expect to hear that your child's body is dumping feces into his abdomen and they need to do a colostomy to save him. So my brain was scrambled, and I wasn't exactly on top of every little thing.

After he came out and we got to see him, and it, I asked how long he'd have it and "months" was as specific as they'd be - I thought up to that point that it would be a week or two, or something, and that it would be fixed before he went home - so "months" was another shock.

My next question was, "When will someone come show me how to care for it and keep the are free from infection?" They explained that someone would come when it had healed a day or two, and teach me all I needed to know. At the time they told me what this person was called, but for the life of me I couldn't remember.

So, being a goofball, I thought and thought, and was convinced that it was called a colostomologist. I told the whole thing to my mother, and called this person a colostomologist to her.

Well, we've since been unable to get our visitation schedule to mesh with said colostomologist's schedule, which isn't a big emergency, since he'll be there for weeks still. But when I was discussing it with the nurse, I asked her again what the job title for said person was, because I wasn't sure I was remembering it correctly.

She says "She's the Ostomy Nurse, or Wound Care Specialist" and I started laughing. Of course she gave me a puzzled look so I told her that I had remembered the title as something else entirely. When I told her that I'd referred to her as a colostomologist, she damn near fell out of her chair laughing at me.

But, the great news is that they like me so much, they decided to adopt the new word and call her that. So, should you ever need a colostomy, be sure to ask your colostomologist how they like the new title ;)

posted by Erin @ 1:07 AM   0 comments

Not much Nova news to tell tonight really. He's totally off of the epinephrine and the dopamine, and holding a good blood pressure without them. He's been weaned a bit more from the narcotics, awake more, and still calm. Eating 14ccs per hour (15ccs is 1/2 an ounce.) They took out his catheter today and now just weigh his diapers to calculate urine output. I've heard stories from men who've been catheterized and they say it's very painful. I don't know, I mean, men ARE babies, but seeing that made ME hurt, and I'm glad it's gone.

--Tomorrow promises to be a busy day. First, I get to meet with the ostomy nurse,(remind me to tell you a story about that- just to give you an example of my goofiness) who'll teach me how to care for the colostomy while he has it.
--The cardiologists will have their weekly meeting in the morning, they're back to weighing their options re: the heart cath and/or extubation. I figure they'll go ahead and reschedule the heart cath now that he's recovered some from the colostomy. If they do, I hope they give me a concrete date on when they'll be doing it. If they decide to extubate instead, I hope he's successful off of it this time. I can't bear to watch him struggle to breathe again.
--And the best news is, I'll get to go earlier than usual, because it's supposed to rain so Scott can't work - I KNOW I'm not supposed to be happy that Scott can't work now that HE's the boss, but I am anyway ;)

Now for me to ask a favor of you all...
Mika at The Maeghan and Heidi Heart Foundation (for kids like Nova in cardiovascular recovery - linked in the sidebar) donates blankets and baby socks to the CVRU for them to use for the babies there. She's just brought in a load of about 100 blankets, and was told by the head nurse (or someone up there) that they're out of baby socks. So, I'm asking you to either buy baby socks (even dollar stores carry baby socks!) and send them to me (my address is in the sidebar in the ad for the Lawn Care Company), or click my donate button and donate the change in your pocket so I can go buy baby socks. They'll all go to her and be given to the heart babies at CMC through the Foundation.
Just make sure if you use the donate button to add in the comments that it's for the Maeghan and Heidi Heart Foundation so it doesn't get mixed up with any donations made to the Poetic Acceptance charity.

Love ya's!

posted by Erin @ 1:04 AM   1 comments

Saturday, March 18, 2006

He is beautiful when he's asleep - but when he opens his eyes, even when they're only little sleepy slits, it takes my breath.

I wish I were a better photographer so you could all appreciate how gorgeous and strong and amazing he is. I didn't ever think about it being possible to feel admiration toward an infant, but him... Well, his strength and will and determination are admirable. He's amazing, and that's all I can say. He has been through so much, and will go through so much more, and he just keeps fighting to get better no matter what has gone wrong for him. He's a lesson in spirit and resolve. Someday, (someday not soon enough) he will come home, and I hope I can do right by him. He deserves so much.

As you can see in the picture, this picture that looks like so many pictures from the last month, his eyes are open and he's trying to take a look around through the fentanyl haze. There is little change in his routine, save for the open eyes and the weaning of some blood pressure meds and sedatives. But he's breathing well, which is my first concern right now, his numbers all look good, he's eating a tiny bit, the colostomy seems to be working, he's peeing like a champ, and he's been calm for days. Calm without the heavy sedation. So things are looking good.

They'll discuss the options of extubation and/or scheduling a heart cath in the weekly consultation on Monday morning, and until then, we take pride in the small things, because for him, the small things are work.

He's been there for 26 days. In ways it seems much longer than that, and in ways it doesn't seem like it could possibly have been nearly four weeks already. I'm glad I've been making these posts, because already things from 2 weeks ago are getting a little blurry. I think it's the way the brain is designed, to let things get sort of fuzzy to detract from the mental weight and stress of it. That's OK too, I'll concentrate on today, maybe tomorrow too if things are going well, and be glad we've even made it through the last 3 1/2 weeks. The details are recorded if I feel the need to remind myself.

This morning I received an email from a mother I mentioned in an earlier post - the mother of the 3 year old with such long legs. He was ADORABLE. Well, they went home and he's doing very well. I'm looking forward to being able to email her and telling her that Nova has gone home. Patience isn't my virtue, but I'm trying!

I got to meet Mika from the Maeghan and Heidi Heart Foundation tonight. I love her even more than before. What an amazing woman. And, she brought presents - she brought Foundation T-shirts for us. She didn't know our sizes so she brought a small, a medium and a large for Scott and I, and she brought one for Nova too. It's a size 2-4 youth, lol, he'll swim in it, but I intend to put it on him just as soon as he can wear clothes!

And I do believe that's about all for today. I'm tired, and still in a weird mood - I'm blaming it on PMS, without the P. *sigh* It's been over a year since I dealt with this brand of hormones. You wouldn't think you'd have to remember what it's like to be moody and achy lol.

I think I'll have a chocolate cupcake before bed ;)

posted by Erin @ 11:59 PM   1 comments

Bunnies and Bears and Hippos - Oh My! This is Novas ever growing collection of stuffed animals. We brought them all from home except the hippo, which his nurse Mel gave him. She even wrote a little message on the tag, because that's the kind of people I get to deal with every day! And yes, it's wearing a diaper. A real diaper, designed for preemies, which is unbelievable tiny. The hippo itself is only about 4 inches tall, and the diaper fits him perfectly!

So today's biggest news is that they moved Nova to a crib this morning, a real live crib! The nurse said that they switched him over and he was awake for a while afterwards, and was sitting there checking everyone out looking like, "Hello ladies lookit me, I'm big pimpin!" which I can totally see him doing! He looks more comfortable. Not that he was awake much while we were there tonight. Mostly he slept, but that's ok, he needs to sleep.

But this whole thing just sucks damn it. I can't wait till he comes home and I can be with him for more than 30 minutes a day! I miss him. I want desperately to HOLD him and bury my face in his fat little neck and just be his Mommy again.

They gave me some literature on colostomy care today. It doesn't seem so complicated. Actually, it seems pretty easy. There's a nurse type person that specializes in dealing with colostomies (sorry I don't know what they're called) and she'll come tomorrow and show me everything I'll have to do. Truth be known, from what they're telling me about how long he'll be in the hospital, and how long he'll have the colostomy, I won't have to do it for very long, a month maybe. But even if it's longer, it's something that I feel comfortable with the idea of doing and I think we'll be just fine with it.

Mika, one of the founders of The Maeghan and Heidi Heart Foundation, will be at the hospital tomorrow afternoon to bring more of the foundation blankets to the CVRU, and I'll get to meet her. I'm really excited about it!

Anyway, I'm off to do something (I dunno what but I feel all fidgety and shit... weird, cuz it's after midnight...)

posted by Erin @ 12:13 AM   3 comments

Friday, March 17, 2006

OK you all lucked out - no pictures of the colostomy - yet.
There is also no real news to report. He's still pretty drugged up because they say that abdominal incisions are one of the most painful and they don't want him to be in pain so he's loopy right now. Versed, Fentanyl, and the occasional Morphine. I don't like the narcs, but I'd rather that than him be hurting. We already discussed the fact that he'll almost definitely go through withdrawal and methadone seems to be the way they plan to deal with it when it comes time.
You see the sail boat there on his belly? That's the bandage from yesterday's surgery, it pretty well goes from side to side. And below it (covered by the diaper) on his right side is the colostomy.

I was going to post pictures, but the bag was, um, well let's just say "not clean" and leave it at that eh? When I do take a picture I want it to be clean and empty so it shows the colostomy itself, not the bag contents.

Remember the 5 day old I posted about? (did I ever actually post about her? hmm) Well she came into CVRU when she was 5 days old, 3 lbs 3 ozs. Tiny. We got word that she died this week. She'd been moved to NICU the other day. We also found out that another baby died today, anotherone who had been moved to NICU.

Somehow I figured that once they were out of CVRU and moved to NICU that they were pretty well assured that they were going to be ok. Guess I was wrong.

I wish there was something I could do for those parents.

posted by Erin @ 12:01 AM   0 comments

Wednesday, March 15, 2006

We were awakened to the phone ringing. Never a good sign. There was "free air" in Nova's abdomen, meaning that there was most likely a perforation in his stomach or colon, which may have been leaking fecal matter into his abdominal cavity, which could cause infections and all sorts of complications. They called to ask for telephone consent to do emergency surgery to find out if there was a perforation, and repair it if necessary.

We gave permission and left for the hospital, we arrived at 9:15. We didn't see him until 12:30.

They did find a perforation (basically a stress induced ulcer) and repaired it, and "washed out" (quite literally) his abdominal cavity. They also performed a colostomy. His intestines now come out through a hole in his stomach, just below the huge incision they made to perform the surgery, and empties into a bag.

They think they caught it early and aren't anticipating any complications, but there is a real possibility here for major complications, systemic (ecoli) infection, sepsis, all sorts of things. Of course, he's on massive antibiotics, and massive amounts of fentanyl and versed again, and they're watching him closely for any signs or symptoms that might indicate any sort of problem.

It could have been much worse, it could still get much worse. We just don't know yet. More waiting.

Obviously, the heart cath is postponed. He'll have the colostomy for months - I don't know how many yet. It isn't permanent, or that's what they say for now. Eventually they'll have to do another surgery to reconnect his large intestine and small intestines so that things work the way they're supposed to again.

posted by Erin @ 7:39 PM   2 comments

Tuesday, March 14, 2006

It's a conspiracy, or maybe I've become some test subject in a psychological experiment. Either way, my sanity is being tested.

Now they aren't going to extubate him tomorrow, because they are going to do the heart cath after all, but now it's on Friday.

I wish they'd just make up their minds.

posted by Erin @ 2:12 PM   4 comments

Monday, March 13, 2006

Nova is sleeping like a champ, eating a little more and a little more - they up the feeding amount every 4 hours so he's already eating more than he was when I left the hospital. I'm telling you, a friggin' full belly is ALL it takes to make my boy happy. If they'd have just FED him after surgery, he'd be home by now! OK, maybe not HOME, but you know what I'm saying, right? Food, damn it, the boy needed FOOD.

Still no plans (that they're telling me about anyway) to do that elusive catheterization, and, they intend to try again to extubate him on Wednesday. Surely, surely it will work this time.

posted by Erin @ 11:58 PM   2 comments

Sunday, March 12, 2006

Zonked again.

They've been keeping the bandage off of his incision site too since it's healed so well. It looks a lot better than I thought it would. Not so hideous after all. It still has betadine and skin glue on it, so this isn't quite what it will end up looking like but not bad anyway. Too bad the picture came out so damn blurry that you guys can't really see it. The red mark above that is where the tape has irritated his skin, the bandage there, with the red tube is his left chest drainage tube... that little black dot in his belly is the stitch where they stitched up the spot where the central chest tube used to be. It's been out about a week now. The blue thingy on his shoulder is his central (PICC) line into the artery there, and of course, the IV in his hand, to which they've added a board. Basically, that serves as a weapon with which to bean himself in the head when no one is looking. Luckily, it's soft. Of course there's the vent taped to his face and propped on the white pad in from of his face.

He's eating again via the NG Tube (the yellow tube in his nose) at an excrutiatingly slow rate: just 2 ccs an hour, but they'll start to increase the rate as long as he does well with it.

The doctors and nurses have been all over him all day. They say he's doing "so much better today that Dr. Stern has decided not to do the catheter tomorrow, but to give him a couple more days to recuperate. If he needs to do it at all, it will be Thursday." I figure they'll still do it, they just had a scheduling problem and didn't want to tell me that someone else was more important than Nova. Whatever - I'm just tired of things changing so often and so quickly. I know that it's just part of the deal, but I'm tired. No one has said so, but I'm assuming that either tomorrow or Tuesday they'll try again to extubate and see how he does and decide whether he needs the cath on Thursday. I wish they'd just make a decision and stick with it. I'd prefer he didn't need the cath of course, but I can't take this on-again off-again thing.

And for the last 2 days, Nova is the only baby in the CVRU, which means he gets everyone's free time. I hear all the time how fat and cute he is, and how they all can't wait to hold him. They better! Me first!!!!

, ,

posted by Erin @ 11:03 PM   0 comments

Saturday, March 11, 2006

Finally, answers!
Well, we weren't at the hospital when Dr. Watts did his rounds, so he was gone for the day when we got there. Normally he's there at 8:30 am, but on weekends it's 6:30, so we arrived at 8 and missed him. The good news is, Dr. Bailey wasthere and he's wonderful about answering any and all questions, clearly. We also had an awesome nurse (yeah they all are) who went out of her way to make sure we had gotten all of our questions and concerns addressed.

And here's where we stand:
They had mentioned the possibility of a cath earlier, it was cancelled because he seemed to be doing better, and they assumed that the infection/pneumonia had been the problem. Last night's problems with coming off the vent changed that, and the catheterization was again brought up.

"Why does Dr. Stern want to do a heart cath?"
They want to see if there is a problem with the vessels to the left lung being too small, or if there are additional collaterals that are "stealing" the blood away from the left lung that need to be repaired/blocked - his trouble with breathing may be due to this situation. If they go in and find that this ISN'T the case, then that's ruled out and they'll dig deeper to find out exactly what the problem IS.

I asked Dr. Young that exact question last night - and I just don't understand what the problem was with telling me what the thought process was. Dr. Bailey had no problem doing it, I have no idea what Dr. Young's hang-up was.

"OK, now if they DO find the above problems, what then?"
They'll do one of three things. If they find that the arteries are too small, they'll either balloon them to stretch them to a more acceptable and adequate size, or, if need be, they'll stent them open. If they find problematic collaterals, they'll "coil" them to occlude or close them.

"Do the stenting or coiling require opening the chest back up?"
No, all of them are procedures done during the cath, and will be done immediately if they need to be done at all.

Did those sound like difficult questions or answers? Sheesh! I thanked him loudly and repeatedly, and asked him why the doctor last night couldn't just answer me like that, because he's gotten an attitude and beat around the bush last night, and hadn't answered ANY of my questions. The look on his (and the nurse's) face was priceless, and with a little gasp they wanted to know which doctor. I, of course, loudly announced that it had been Dr. Young who'd all but refused to answer me, had taken a condescending tone, and really pissed me off. Neither of them made any comment, but I made my point.

Needless to say, I really like Dr. Bailey. I have since day one. He's always answered any question I asked, regardless of what it was, and did it happily, and when necessary, at length. He's friendly and seems to understand my need for knowledge. Dr. Young acted like I wasn't allowed to know, and Dr. Watts sometimes talks over my head. That's my lack of understanding, and definitely not any unwillingness on his part to let me know what's going on. He's just so amazingly intelligent (I'm honestly in awe of his abilities) that it's almost like he explains too much... No not too much, too many different ways.

If I ask for directions to Duncan Donuts, tell me the most direct path, but don't follow that with the 13 other ways to get there, know what I mean?

Anyway, the cath (and whatever other procedures they decide to do) are scheduled for 1:30 Monday afternoon.

As for today:
He was taken off of his dopamine and maintained a good blood pressure. He had to have his other femoral PICC line moved because it was just overworked and worn out - it was moved to his right shoulder.

They took him off of the new sedative (which I can NOT remember the name of) and put him back on ativan and versed. Not what I wanted to hear, but necessary, because the other wasn't keeping him calm and they actually had him restrained to keep him from yanking out his tube. Plus, the way he was turning his head back and forth was possibly causing friction on his throat, which causes swelling, which makes it MORE difficult to extubate. So he needs the narcotics to keep him calm. Damn it.

Man this is a long post. Sorry!

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posted by Erin @ 11:28 PM   3 comments

Extubated at 1:30 this afternoon.
Re-intubated at 10:00 pm
The heart cath seems to be back on the table for next week.

I hate Dr. Young, he's a condescending ass with no bedside manner and the ability to dodge a question, repeatedly, no matter how (or how many times) you ask.

First they say that it isn't unusual to have a child need several opportunities to come off the vent, then they tell you that since he isn't off the vent, they need to do a cath. Seems to me that you do a cath because you suspect a problem, which doesn't sound like something that's "not unusual."

So I ask, like any parent would I think, "OK, what are we looking for with the cath? Is there something you suspect you might find that could be a contributing factor to his being so dependent on the vent?"
Of course, Dr. Young (the aforementioned condescending ass) just skirted the issue and said basically, "Every child is different. We wish he'd already been successfully extubated before now, but some kids just take longer."

"OK, so why are we talking about doing a cath?"

"Well, what I'm trying to tell you...

Never did really get an answer, just got attitude. I hope he gets a flat (or 4) on the way home.

So, I'll have to go early tomorrow in hopes of catching Dr. Watts doing his morning rounds, and when I do, I will be clear about my feelings about Dr. Young's refusal to answer my questions.

Forgot the camera, no pics.

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posted by Erin @ 12:54 AM   2 comments

Friday, March 10, 2006

All the pictures seem to look the same anymore. Poor little guy.

Sorry I didn't update yesterday, but hey, now you get a report and a half :)

Yesterday, he was completely off all narcotics. He's on a patch to stave off the worst of the withdrawal symptoms, although he was a little sweaty, and yawning a lot, which are symptoms, but if those are the worst of them, we can handle that. He's on a different type of drug for pain which isn't a sedative, isn't a narcotic, and doesn't knock him out. The name escapes me but I'll ask again today when we go up.

His kidney function and all the magic numbers on the monitors were really good, and he was more "with it" even when he was asleep. I know that sounds silly, but there's definitely a difference between a narcotic stupor type of sleep, and a plain ole' regular nap. The nurse was impressed - he slept for 4 hour stretches. We had finally gotten him to the point of sleeping for as many as six some nights before he went in for surgery. We figure that is a thing of the past lol.

He was breathing really well without the piggy-back effect of him fighting it or breathing "over" it. They weaned it down a bit on the pressure, and he was more comfortable.

We were only able to be with him for a total of 30 minutes yesterday, which I hate, but I felt really good about where he was and how he was doing when we left. Some days we're there all day, and I leave feeling stressed out and worried you know?

This morning before I even woke up Scott called to check on him and we have the same nurse as yesterday, whom I LOVE and wish she was on all the time. She's dedicated to keeping him off the narcs, and is willing to work to comfort him without dosing him with morphine, which can sometimes be work. She does this thing called 'angel wings' that creates the same thing as swaddling and works really well on him.

Anyway, she told him not to be surprised if he's in a different spot, because right now he's under an a/c vent and she doesn't like it. Besides, there's been some talk about putting him in a crib because he's so big lol. OK, a new spot is good for us, a regular crib is cool...

And then she says they plan to try to extebate him today too! This is big news, and a little scary, because he had a hard time last time they took him off, but he seems so much stronger now than he was then though, so hopefully it'll be more successful and he'll do well and stay off. BUT, some children take as many as 4 or 5 tries at breathing on their own, so we'll try not to be too disappointed if he has to be put back on.

It's good news in and of itself that they're willing to try again. That means they think he's improved enough to try, and it means that there are definitely no plans to do that cath next week. Now to get him EATING! He's losing weight, and I can't get myself over the idea that he feels like he's starving.

posted by Erin @ 11:26 AM   2 comments

Thursday, March 09, 2006

Amazing what 5 minutes on the phone can do for ya.
I talked to Dr. Watts around 9am, and the rational side of me was right.

There is only one doctor right now who does the heart cath procedure - Dr. Stern. His schedule is obviously full, and he has to schedule in advance because he's so busy. When Nova hit his plateau due to infection, they were concerned that he'd need a cath and were discussing when Dr. Stern could do it.

However, according to Dr. Watts, Nova is looking better over the last 2 days and they're going to begin weaning the sedatives off again - which actually started yesterday afternoon. Dr. Watts said that there was nothing to be concerned about, that there were no new developments as far as Nova's heart, and that it was mainly a "what-if" conversation about scheduling, which seems to have been negated by the re-start in Nova's forward progress.

I feel better just having touched base with him. I wish I could be there for rounds every morning. I want to know EVERYTHING that's going on, everything that's being done, everything that they're considering doing, and most of all, I want to know the "why's" of all of it. I figured that going through this process would give me an understanding of so many things, as far as biology of the heart and the effects of the different drugs and such. I feel like I know LESS now, lol. I'm overloaded with information and I can't keep track of it all sometimes.

I've been researching the systemic effects of narcotics, at least the ones Nova's on. I didn't realize that narcotics depress respiration. Heh. That makes sense and explains things a little doesn't it? They also cause hypotension (lowered blood pressures) which also makes sense.

My next bit of research is on withdrawal symptoms and their duration in infants.
Ativan, Fentanyl, Versed (or midazolam) and Morphine are the drugs he's taking, or has been taking. They've got him off the fentanyl, but he's on the ativan drip, and morphine PRN (as needed) Ativan and Fentanyl have a half-life of approx. 16 hours, Morphine's half-life is as little as 2 hours. Versed is about 5 -7 hours. Those are pretty good numbers, some drugs have half-lives that are DAYS long.

You ever notice that when you see ads on TV for medications, they list side effects? may cause nausea, diarrhea, vomiting and dizziness. In rare cases, death may occur... Well, when they put your kid on all of these meds they don't tell you the side effects before hand. In reading up on all of these drugs, the side effects are really frightening!

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posted by Erin @ 12:58 PM   2 comments

Look at those beautiful eyes! He's awake again tonight - but grumpy. That's probably a good sign, it's the true Nova coming back, I mean he's spoiled rotten and is used to getting picked up at every whimper. Of course, he's been zooted for the biggest part of his 16 days in the hospital, and doesn't realize he hasn't been held in weeks - so he still thinks that if he whines, he should be picked up. Only, he doesn't get picked up, and proceeds to scream his fool head off - silently, thanks to the ventilator.

They fed him a little again last night, then he pooped a beautiful shade of maroon, so they stopped feeding him again. He basically hasn't eaten in over 2 weeks. He must be so hungry. Who can blame him for being pissed off and ill-tempered. I mean, he's on intravenous nutrition, but that doesn't do anything for the grumbly tummy.

We ran into Dr. Bensky in the halls tonight. He's Nova's regular pediatric cardiologist who was seeing him every week or so pre-surgery. I like him a lot. He was asking about Nova and said Dr. Stern has been keeping him sort of up-to-date on Nova and that...

>insert pregnant pause here<

apparently there is some concern about the size of the pulmonary arteries to one lung, and they're talking about doing another heart catheterization next week to see "what things look like in there." See, the arteries that they basically made by hand to go to the lungs have to be a certain size to maintain blood flow to the lungs and out to the body. If they're not big enough, not enough blood gets delivered to the lungs, and therefore, not enough oxygenated blood gets sent out to the extremities. His pressures were already expected to be uneven, but apparently, they're more uneven than they'd hoped for. We were told to begin with that he would almost definitely have to go in for balloon heart catheterizations as he got older and bigger - to stretch the arteries because they tend not to grow adequately on their own.

OK, here's the problem. We're never at the hospital at 7am-ish when Dr. Watts (the surgeon and 'guy in charge') makes his rounds, so we rarely get to talk to him, because he's usually in surgery when we ARE there. There are things that only the doctor can tell you - like the pneumonia thing. And since we haven't been able to talk directly to him, there are things we aren't being told. I understand the procedure, and even the reason for the procedure. Unfortunately, it leads to misunderstandings and confusion. I have NO CLUE whether this is something that he foresaw (is that even a word?!), or if it's in reference to the things he'd already discussed with us. I don't know if he's DEFINITELY having a heart cath next week, or if it's a consideration they're mulling over. I have no idea whether this is something serious, or something routine, a surprise, a complication, or nothing to worry about. Is this something that needs to be fixed NOW? Is the cath next week an exploratory type of thing, or is it a balloon cath?

I'm frustrated beyond words that I'm sitting here wondering about my son's condition. It really can't be helped - and most likely, Dr. Bensky will have his ass jacked for telling me anything at all about it before Dr. Watts has had a chance to discuss it with us. But, I'm calling Dr. Watts tomorrow, and the man IS GOING TO EXPLAIN SHIT TO ME. Luckily, Thurdays are Dr. Watts' "office day" -no surgeries, so I should be able to get a hold of him fairly easily. Otherwise, when I go up tomorrow evening after Scott gets home from work, I'll hunt the man down, I'll have nurses page him, I will find his house and invite myself dinner. Something's got to give. I can't sit here worrying, verging on freak-out mode, when I don't even know what any of this means. My rational side is trying desperately not to over react. The distraught mommy side is already homicidal and throwing shit around the hospital.

I've GOT to get some rest, get my head on straight, my emotions a little more under control.


posted by Erin @ 12:59 AM   1 comments

Wednesday, March 08, 2006

The first email I read this morning:
Sending love light and reiki to Nova and your family. May the spirit of love surround you all and bring you to new understanding each day. Nova is a beautiful whole spirit who comes to you and the world with a message of love, hope and Healing.
Love And Light
enter senders name here

That's the kind of "prayer" I can get into. Somehow reminded me of E2's cords and Tom Robbins. Picnics on warm spring days as a child. Morning glories. Nova's fingers wrapped around mine... I may be losing my mind, maybe I haven't had enough coffee yet, I don't care. It made me feel good, and I sincerely hope that my lil guy is feeling it too.

The nurse is still blowing smoke up my ass about the pneumonia, but she did take the time to make sure that I understand that the antibiotics he's getting cover "any infection we have found or suspect" She also says he came back positive for a urinary tract infection, but kidney function is up, fever is gone, he's calm and resting. Vitals are looking good this morning and he's had no problems with anything overnight. Sometimes no backward progress is as good as forward progress.

I'm so proud of him, and miss him so much.

posted by Erin @ 10:26 AM   2 comments

Tuesday, March 07, 2006

There's a weird thing going on with me. You know how religious I am, I mean, my faith could almost fill a thimble. But today I got some pretty bad news - pneumonia is seriously bad news - but I feel oddly calm about it.

All those warm wishes and positive thoughts you guys are sending must really be doing some good for me too!

Either that, or I've finally lost that last marble... I'm betting on the earlier, rather than the latter, because I actually lost my mind years ago :)

There's a 3 yr old boy in the bed next to Nova now - he arrived yesterday. He's SO big! I mean those are some seriously long legs! Anyway, we talked to the parents while we waited for our visit yesterday, and she told me her son's name and age at that point. Last night I got my daily batch of letters from a support group on Yahoo for parents of heart babies (and adult CHD patients) and Lo and Behold - she is a member of it too! Pretty small world, considering the prevalence of CHD's and how HUGE a Yahoo Group can be (I mean, they're global, know what I mean?) So I followed some links and found out she has a website about him. He's awful cute without all those tubes!

So I took one of the photocuddlers that I sell through, put her son's picture in it, so I can give it to her today. I KNOW they're supposed to be for the charity, but something just told me to do it. About halfway to the hospital, I chicken out because I can't figure out how to give it to her without looking like a total dork. I left the bear in the van, and when Scott realized I had done that, he commenced the ragging.

But honey, you put their son's picture in it and brought it just for them...
I think it's a sweet thing to do...
C'mon let's go get it and you can give it to them when we go back upstairs...
Doofus, I can't believe you left it in the van...
You big boob, just give it to them!

And all I can think is that she's either going to look at me like I'm insane, or be pissed at me for printing out her son's picture. But we go get it, and I argue some more, but he pretty much just told me to shut up and do it. (He, however, wouldn't do it, because it was "girly.")

We got it, went back to the waiting room, and she walks in. Sheepishly, I call her over and explain that I'd found her on the group, followed links to his page, printed out a picture (hope that's ok...) and gave her the bear.

She nearly exploded. She was so tickled. She's a "picture person" she says, and shows me her bracelet that her sister got for her - little silver picture frames
each full of his smiling little face.

"And this one we just got done - you know, I'm sure you do - with the surgery coming up, we wanted professional pictures done, and this is my FAVORITE!" as she turns the bear around to show me the picture I'd chosen.

I'm so glad Scotty gave me hell all day and made me do it.

Thanks Scotty! You made her day. And I won't tell anyone how important it was to you that we give it to her - because we wouldn't want anyone to know what a smushy sweetheart you are! (Or what a doll you've been to me, how absolutely wonderful.) I love you baby.

posted by Erin @ 11:07 PM   2 comments

Not much more to add, except this:

He was asleep the whole time we were with him today. He needs the rest. He's still laboring to breathe, but not as badly. And by the way, we're not supposed to know that he has pneumonia! When the cultures came back, one of the nurses who shall remain nameless at all costs, read them and translated them for us - told us he has pneumonia, then said, "But you don't know that because only a doctor can give you a diagnosis..."

We, of course, didn't see the doctor today.


posted by Erin @ 7:42 PM   2 comments

Well, I found a connection at the hosptital - we'll see how long it lasts. Today's news so far: Nova has pneumonia.

I could have bet on that 2 days ago when he was laboring so hard to breathe. The good news about that is that they're treating it with an antibiotic that targets the bacteria that causes pneumonia, rather than a general one, so he should start getting well pretty quickly.

He actually looks better today than yesterday, even though we know his lungs have fluid on them. He's resting, breathing more easily than he was last night. Poor little guy just isn't going to do this the easy way.

More later, should there be more to tell.

posted by Erin @ 3:32 PM   0 comments

Monday, March 06, 2006

Nova definitely has an infection, we just don't know where it's coming from yet. They sent off cultures from every possible source - sputum, blood, urine, fecal, they even sent in the tip of the tube from his PICC line. He's running a fever of 102, fighting the vent (which has resulted in worse conditions with his oxygen levels than being off the vent and fighting to breathe) he's been spitting up, having diarrhea, is now on antibiotics, IV fluids and more sedatives (Ativan - listed side effects: nausea, vomiting, diarhea - just what he needs, something to add to the symptoms he's already having))to try to keep him from fighting the vent. If the sedatives don't work, they'll most likely restart the paralytics, but they're trying to avoid that, because that would be an even bigger step backwards than the one he's already taken today.

They're now suctioning everything out of his stomach (again) so that the vomit doesn't get aspirated into his lungs, and they aren't feeding him (again/still - he didn't really get fed for long.)

He's on an ativan drip, which was upped again at 8:30, his heart rate is up, his blood pressure is down, his sats are lower than we've seen them since the surgery. They changed out his vent tube this morning for a larger size, then at 4 o'clock they changed which type of vent they had him on again (when they re-intubated him, they had him on that other model, now he's on the one they changed him to the first time they switched them out.) Unfortunately, none of that particularly accomplished anything. You can watch him fighting it, he bears down and holds his breath. The extra effort in combination with the lowering of his oxygen level has created a situation where he's become "acidotic" which means basically his PH level is off balance so they're treating that too, and occasionally giving him morphine - in addition to the other meds he's on, which at this point, I can't even swear what those are, because they change from hour to hour it seems.

Where they re-did his PICC line in his groin looks horrible, it's red and swollen and bruised. The fluid draining from the left chest tube has increased significantly, he isn't peeing right again, so he's back on lasix and diuril.

It has been an exceptionally bad day - hard on him, nerve-wracking for us, and a pretty big slide in the wrong direction. The only good news is that Dr. Watts says there isn't a problem with his heart function. Everything else seems to be in question, but the heart looks good so far. I'll be glad when (in about 2 days) they know where the infection is, and can start treating it more directly than this general antibiotic treatment he's getting right now. And of course, there's still no information about the neurological stuff, considering the more important issues at hand.

I'm a mess, frankly. I don't know how people survive this experience - let alone the parents who have children who require multiple surgeries. I didn't want to come home tonight. I wish I could stay, I wish the hospital was closer at least. If anything happens, we're at the very least 35 minutes away, and that's hauling ass with no traffic.

This is not a roller coaster at all, it's a barrel roll followed by a stall, performed by an unlicensed pilot, in a dilapidated single engine plane - without seatbelts or parachutes.

posted by Erin @ 11:21 PM   4 comments

I've never been one for rollercoaster rides. It was never that exhilarating to me when you plummet down that hill with your stomach in your throat.

The day before yesterday was one of Nova's worst, yesterday was one of his best. Today, they call for phone consent to change his picc lines (IV lines, only they actually run a tube into the vein rather than just the needle like a normal IV) changing the IV lines isn't that big of a deal, but the reason they want to change them is because his latest chest xrays came back and his lungs look cloudy, which might indicate an infection.

They don't know yet if there is an infection, they're doing bloodwork and will be super-vigilant about it. Infection would be bad news, obviously. Poor little guy, he's been through hell already. I wish this were easier, more straightforward, with fewer maybes and unknowns.

Tags: , ,

posted by Erin @ 1:00 PM   0 comments

Yup, awake, and actually not stoned. He focused on Scott, and on his favorite toy, the camera, and even tracked the camera, which is encouraging. He's still prety irritable, and I'm still uncomfortable with the way he sometimes rolls his eyes up in his head. Still no way to tell whether it's the effects of the narcotics that they're still giving him to keep him comfortable, or possibly a sign of the withdrawal, or the hovering question of neurological problems. I know that he was much pinker today (amazing how pink they look when you're so used to the grey/blue duskiness that it becomes your version of pink) and he wasn't gasping or so damned exhausted.

It was just such a relief to finally see him cognizant of his surroundings, and aware of our presence - we haven't seen any semblance of 'our Nova' in nearly 2 weeks. This picture was at about 1pm this afternoon. We went back in at 2 (hee hee we finnagle extra time because I'm good like that, and a little pushy too ;) ) and he was asleep. At 4, he was one seriously pissed off little guy. The nurse had tried for some time to comfort him, but he was inconsolable. She let us stay for 40 minutes (alotted time is 15 minutes) so we could try to calm him, but he screamed the whole time. She had to give him morphine to sedate him to get him calm. Then at 6 we went up again and he was completely zooted, and out like a light. His blood pressure was a little low so we were trying to stimulate him that time. He wasn't having any of it, he'd had his 'fix' and he was in lala land.. She ended up actually picking him up and readjusting him in the bed just to get him awake and get his pressure up.

He does not like to be moved, and to be honest it looked like it hurt, but he only cried for 2 or 3 minutes and went back to sleep.

I will never be so happy as I will be the day I get to hold and snuggle him again. I miss the way he feels in my arms, the way his tears subside when I hold him close and nuzzle in his neck. It's been 12 days now. I have no false expectations about the length of his recovery, we know we may have another month to go, but I miss my baby. My arms are too empty. I dream that I hear him crying in his crib in the middle of the night and it takes me a minute to remember that he isn't here. I wish, honestly, that my life lent itself to staying there 24 hours, even if it meant sleeping on the floor. I hate leaving him.

Anyway, they're talking about trying him off the vent again tomorrow afternoon or Tuesday, but I'll be patient about that. I just can't handle him laboring so hard just to take a breath.It's such a catch 22. He can't come off until he's ready, but the longer he's on it, the more dependant he becomes on it, which makes it harder to come off.

He's been through so much, worked so hard - and we're not half way there yet. He's been through things that adults would have a hard time dealing with. He's amazing and I'm so proud of him.

As for the neurological possibilities, well, the questions still linger, and truthfully, we're no closer to knowing anything definitive. They say that at this point, even a neurologist could tell us nothing more. So I try not to worry about it, worrying accomplishes nothing anyway - and if he has suffered brain damage, well, we'll deal with it. Right now, we hold his hand, rub his beautiful little head, and be his cheerleaders.

posted by Erin @ 2:58 AM   5 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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