Friday, March 31, 2006


I wonder exactly what it is that people are looking for when they do a search on "Poems of Acceptance" or "Acceptance Poems" or, better yet, just "Acceptance" - all three terms land a LOT of people here. I hope at least a few of them find whatever it is they're looking for. Somehow I doubt it.

The weather here is beautiful today. Yesterday too. Perfect day for playing outside. Looks like we might get some rain this evening though - they were calling for thunderstorms, I haven't checked if they still are, but I'd sure love me some of that.

Nova's still having a good day. Nothing of import to report, except that we'll be leaving to go see him soon. Scotty had a lot of work to catch up on today (since he took the day off for the heart cath), so we're getting a late start. It's amazing how he went from hardly working to being so busy he can't see straight. The season has begun, and it'll keep going through like October.

My rose bush is looking really good this year. Last year Scott saved it from the dump (a removal from someone's yard) and we planted it. They hadn't trimmed it or anything in quite some time, so we let it settle in and pruned it recently - last year it was a bunch of pokey thorny leggy sticks. This year it actually has leaves, lots of them. We'll see if it actually puts out any blooms. The gardenia didn't fare very well, but it looks like it has some new growth, but only after some seriously aggrssive pruning on it too. My hostas are doing pretty well, and those bushes that we can't quite identify are getting full and bushy. The rosemary has taken over it's area, and the canna lillies are coming up. I need to get out there and do some serious weeding, and we need to get a couple of yards of mulch too.

None of the irises have bloomed, but as I recall they bloomed a little later than the daffodils last year too. I'm not really looking forward to them anyway, they're that horrible shade of dead blood. Yuck. The beds out front are just bushes, but they really look good. We used cyprus chips for those, and it looks really nice with the varigated foliage of the bushes. We need to replace the railing on the front porch though. We don't use the front door, so it isn't a safety issue, it's just damned ugly. worn and grey and old and ugly. We have 3 dogwoods out front. 2 need to come down, the other (my Mona Lisa) is just about to hit full bloom.

Anyway, Scott's ready to go so we're going!

The Blue House April 2006

Lookit! In this crazy time in my life, when I've made little or no attempt at being published anywhere, online or off - I've managed to find myself in an online poetry Zine!

The April edition of The Blue House features 3 of my poems, along with the work of many other poets, including John Sweet. I absolutely LOVE John Sweet's work, and am honored to be included in the same issue with him, and other such talented poets.


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 :|

Thursday, March 30, 2006

The hysterically inevitable

From: "Shaela Phillips"
Date: 30 Mar 2006, 01:11:21 PM
Subject: Re: Poetic Acceptance


You are so nasty...please remove my email from your site, you did not have my permission to post my email. That's illegal. Believe me honey, I have tons of authors that support my efforts and love what I do.

Shaela Montague-Phillips

Creative Consciousness at its Best

Oh, bless her heart, she called me "honey." Of course, when it follows "nasty" I guess she doesn't mean it in a loving way eh?

For the record, it isn't illegal to post email, I've researched it, she and I have discussed it before (the last time she threatened to sue me.) There are only certain cases where it IS illegal, and this one isn't covered either of those umbrellas, unless of course she'd like to admit publicly that her supposed non-profit organization is actually something she profits from personally...

Guess what folks? Life is amazingly good - despite all of this,hell, I'd even venture to say that life is good BECAUSE of all this.

If I had 3 wishes they'd go as follows:
1. I wish Nova was home and healthy.
2. I wish every person who ever considered doing "business" with Shaela Montague-Phillips, Meeting of the Minds, or Chapbook Enterprises could read the full story of my dealings with her before they sign that "contract" of hers.
3. World Peace (of course, right?)

Oh, wanna see something else funny?
It's been down for days with a message about how it's been "temporarily disabled" with a phone number for the owner to call. Now it's just a 404 'page cannot be displayed' thing.


Wednesday, March 29, 2006

hahahahahah lmfao

Every silver lining has its cloud eh?
Here's the cloud that tried to piss on my parade tonight:

Date: 29 Mar 2006, 05:31:07 PM
Subject: Re: Poetic Acceptance

HTML content follows


No one else has emailed me or has come to me about any of their books. So you can keep your bitchin to youself. My new authors love me, and I keep getting reorders. In fact, my offline business has been gaining 100% of the profit. I did look at the books I sent you and they looked fine to me, I check everything before I mail them. Like I said the gloss stock does chip off paint, thats any press, I don't go to a super high cost press. I am sorry your not satisfied. I am really done with this coversation, your not going to be positive. Rermember Erin, you can caught more bees with honey than you can with vinegar. Even if I could financially afford to send you more, because of how nasty you been to me and the fact you won't work with me makes this relationship unbearable. Remember I contacted you, nothing changed from the I sent you when you first said you loved it to now but the paper. I put the linen in there just because you were my friend, however that wasn't going to continue. Linen paper is a higher quality paper and for me to make all those books in linen, it would have been in the hundereds. In my journals and chapbooks I use that paper which a 24 lbs stock, very nice qualitiy. Don't take your life's frustrations out on me. Goodbye, stop emailing me!

Shaela Montague-Phillips
< >Creative Consciousness at its Best

You got it kiddo, not one more message from me will pass through your mail server. Enjoy your fantasy world, pay your phone bill or some shit with my $48 bucks and kiss my ass.

LMFAO too god damn rich... Thank you EVER so much for showing your true self! At least now the truth is here to be seen.

3/29/06 - last post today

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!

He's OUT!

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!

Waiting... still waiting

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.

3/29 - 8:30am

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.

Tuesday, March 28, 2006

tonight and tomorrow

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.


I'm a horrible wuss when it comes to the phone. I'm almost phobic. I'll make excuses, pretend not to be home, ignore it, turn it off. Seriously, it freaks me out. I break into a wet sweat and stuff. Then, sometimes, it rings, and there's no one else to answer and make excuses for me, and so I answer, and mutter and stutter and stuff. And sometimes, I have the phone in my hand cuz I'm about to use it, and it rings, and I realize it's someone I love (thank god for caller ID!) and I answer before I have a chance to get scairt. So what's my point right? As in

what are you ON about Erin!? MARY CALLED! That's what.

I <3 Mary!

And I answered without stuttering or anything! And we talked for like 40 minutes, and we giggled and bitched and laughed and griped and had a generally female good time! Yeah, that's what a phone call is supposed to be like. I wonder why I hate the phone so much?

Heh. I'll have to change that.

I'll bet Ang and I would even survive a phone call... We're both phone phobic, so we've figured we'd have a phone call that sounded something like this:

Ring ring




more silence

and more silence

Wellll, guess I should go...

Yeah, me too...

K. Well, Good talkin' to ya...

You too.


K, bye.


Oh, just before Mary called, the hospital called again. They wanted phone consent to insert another central line before the cath tomorrow. That means A) the cath is pretty much gonna happen. B) the veins are seriously more dilated than before or they wouldn't even attempt another central line C) they'll finally have another line to run meds through, which makes things much easier!

I needed a day like today!

Thank you Powers That Be!

3/28/06 am

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)


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.

Monday, March 27, 2006

Poetic Acceptance: The Saga Continues

Is it customary practice for a chapbook publisher to use a chain store to produce their chapbooks? I mean, when someone refers to "their printer" would you expect them to be referring to Minuteman Press or some other place like Kinko's?

So, yeah, the chapbook thing hasn't worked out, but then, we all sort of expected that didn't we? It's just a damn shame that she used this point in my life as an opportune time to try and save face and appear as though she was living up to our contract.

I was promised 50 books, I received 16. (Apparently she believes that she isn't obligated to honor the original quote because "her printer" charges more than the other one did.) The binding is of a different style, the books aren't properly/adequately folded, the colors and fonts have totally changed, the paper quality went down a few notches, and the card stock used for the cover cracked when it was folded. However, she says she got a proof, and OK'd it, guess it looks good to her.

I can only assume that she expected me to be too preoccupied with Nova to notice, or too emotionally exhausted to fight the fight.

Want to hear a good one?
Personally, I am done with your unappreciative attitude.
How's that for rich? I'm supposed to appreciate having it slammed to me. What WAS I thinking?!?!
She says I'm nasty, lol. She says I'm bitter. I've been thinking about my unappreciative attitude, and maybe she's right... So here it goes:
Thank you Shaela and Chapbook Enterprises for fucking me up the ass, not just once, but TWO TIMES! I'll forever be grateful, seriously...
How's that for nasty, and bitter?

I'm not bitter, I'm pissed off, and with good reason. That isn't the same thing as bitter, but then, whatever. It isn't as though I'm surprised. I just hope that her future authors get a better experience than I did. As for me, I'm done with the whole thing. I've honored my end of the contract by reordering and now I can put it all behind me. Hell, I can even take my manuscript to Kinko's all by myself now!

I'd be embarrassed to even attempt to sell these, but as she said, I can always give them away. I'm keeping one copy, as a reminder to myself, and proof of the sorry ass quality - but if you want a free copy of Poetic Acceptance, I've got 15 copies to rid myself of.

How I really feel - uncensored

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.

Sunday, March 26, 2006

artistic rendition?

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

"That was easy!"

"That was easy!"


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.

Brilliance - by Ang

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


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.

Saturday, March 25, 2006


My mind is roiling right now, slap full of entirely too much negativity that I simply don't have the time or energy to deal with. To be honest, I think that it should be illegal (as Ang says) to kick a person when they're down. I have been knocked down, used, kicked, then used again, kicked some more and then insulted. It makes me absolutely sick. And what's worse is that I expected it. At least I'm not surprised.

It makes me sad though, because every time something like this happens ("Something like what Erin?" you ask. "It doesn't really matter does it? The details are superfluous.") I think to myself, "Self, someday you'll wisen up, realize that people WILL ALWAYS take advantage of you when given the opportunity." And then my self says, "But I don't want to be the bitter mistrusting woman my mother has become!"

You see I tsk-tsk my mother all the time about how she mistrusts everyone. I tell her that she should give people a chance - that she might just be pleasantly surprised. But she swears that she's learned her lesson over the years, she doesn't give anyone the chance to do her wrong, and I just shake my head at how sad it must be to go through life like that.

Hell, maybe she's right. She may be hard, but at least she isn't constantly fucked-over.


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.

a lil reminder

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

Blue Tattoo: Transition

I miss the poetry I used to write and post. My mind is too tired to write it, my body is too exhausted to sit here and type - but my mind, it is hungry for the imagery, the sensory input of how words scratched on paper sound. So, I haven't written, but I've read, and this is what I've found to love tonight. Blue Tattoo: Transition

I've said it before, and here I am saying it again. I love Blue's work, I want to roll in it like a clean dog wants to roll in the mud. I want to wear it, smell like it, feel it in my hair.

I want to get dirty in it - and damn if she doesn't always fill that desire.

Friday, March 24, 2006

Zooted totally am I - ribbit.

3/24/06 from the hospital

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!

for the CVRU babies

**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!

3/24/06 am

My phone rang at 3:15 am. Do you have any idea how friggin scary that is? They needed phone consent to change out his vent tube for a larger sized tube and run another central IV line. These are pretty routine procedures, not really anything huge. They needed another site to administer all his meds. That's one of the pitfalls of long term hospitalization. IV's and central lines only last so long, then they have to change them out. And they've had issues all along with him having what they call a leak around his vent, so neither of these were a big deal, but my adrenaline level hit the roof when the phone rang and I was up for quite a while after that. I mean, when the phone rings in the middle of the night you think something must be very very wrong.

Then they called again this morning for phone consent for a PICC line.

Hmmm... I thought a central line and a PICC line were the same thing. Regardless, we knew they were having problems with not having enough places for all his meds to go in, so now there are 3.

And now we're off to the hospital. More later.

Thursday, March 23, 2006

Up and down - and up

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!

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.

To add to all of this, when we got home from the hospital, Ma told Scott he had a phone message from Randy's wife. He returned the call, and she said that the doctors have said that there's nothing more they can do for Randy. The chemo has stopped working, and they never got him in remission long enough to get the transplant. They're telling Randy tomorrow.


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.


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?

Monday, March 20, 2006

3/20/06 #2

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.

Good Morning Spring...

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!


In 4 hours and 41 minutes, Spring officially arrives!

Happy Vernal Equinox!!!!

silly silly girl!

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 ;)

calm today 3/19/06

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!

Saturday, March 18, 2006

3/18/06 - a little late

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 ;)

Poetic Acceptance Take 2

I got an email yesterday from Shaela. She apologized for all the past crap and offered to make things right by sending me the books I'd ordered before. Actually, she'd already corrected some mistakes in them and asked if I was still interested in them because she was expecting the proofs, and wanted to fill the order I'd made.

As for past crap, I don't have the energy to dwell on it. I have much more pressing things to dwell on. And the books, well, why not? I mean, the worst that can happen is that I never get them, and that's pretty much where I was before I got her mail, so it isn't like I have anything to lose right?

So, I might have more chapbooks in stock soon. I hope I do - the whole fiasco broke my heart. I know the chapbook is far from great, because I had no idea what I was doing to be honest. But it meant a lot to me anyway, and to have it all go to shit the way it did just hurt my feelings. Yeah, I know, I should be able to be more objective and detached from my work, but I haven't been able to manage that very well with Poetic Acceptance.

6 months ago, I'd have said something silly like "I love it like one of my children!" which sounds pretty silly now, but it did have a special place in my heart. Probably the only thing, aside from my children, that I've ever really accomplished. I'd like to think that it could at least fade into nothingness like most chapbooks do, rather than ending the way it did.

Anyway, I'm a little wary, mostly in self-defense lol. Just don't want to get hurt again. Ha, now I sound like a jilted lover. Shut up Erin...

Clutching Kite String

This is something I started that went nowhere. Maybe if I 'put it out there' I'll feel motivated to do something more with it. Probably not.

Clutching Kite String

Today the wind blew cold breaths down my collar
tattood ominous notes on my neck in goose-bump braile.

No matter how I hunched, ducked, zipped, cringed -
she refused to be ignored. Once, the sun crept out

peeked from beneath her billowed skirt, just long enough
to nod a mild good afternoon and be on his way.

abstractions or distractions?

My guts are all tied up tonight and I don't really know why. It's not like anything new has happened to make me feel anxious or worried - I just am. We've had a couple of good days since the surgery, I'm OK with where we are and what we're facing and all of that. I think that maybe it's exactly that... That I'm not feeling the pressure to hold things together, there is no ominous black cloud lingering over us, I'm not holding my breath for anything new, so all of the fear and concern from Wednesday are finally settling in.
The moon was just a bit past full tonight, and low, and huge, and orange, and eerie, but beautiful.
Kory learned to knit while we were at the hospital tonight. Pretty cute, watching a 14 year old boy working with yarn and knitting needles just as whole-heartedly as he ever does with his video games.
I love Crystal Light Lemonade. I tried it last night in the hospital cafeteria. Yummy. I'm sick sick sick of pizza. There are 5 different places at the hospital to choose from for dinner. Generally, the pizza place is the only one that doesn't suck, and I'm not a particularly picky eater. Their beef tips are awesome though. Too bad they only have them once a month apparently, since last night was the first time I've seen them on the menu.
I returned the rental pump Wednesday afternoon. The stress, the crazy hospital schedule, the lymphatic system damage and the miscommunication about the length of time he'd have to be on the special formula all pretty much made it impossible both mentally and physically, to keep up the pumping. I wish that were not the case.
My son's body will be riddled with scars. Not horrible ones, but many of them, 2 of which are 6 - 8 inches long, in an upside down T formation. Hopefully someday, some woman will find them sexy. Until then, I hope people just leave him alone about them.
I am out of things to say, and yet, finding a strange sense of comfort in typing. What's up with that? I'd try poetry, but I can't think that hard right now.

It's nearly 3am. I should make myself go to bed.

I hate this weird mood I'm in. What do you get when you combine unexplained dread with sadness and anxiety? I'm feeling completely funky, thankyaverymuch. Rum and coke? I'd love one, but I'll pass. Hell, I feel a little off balance completely sober.

Friday, March 17, 2006

Wildlife in the Hospital

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.

I finally get to meet Mika, one of the founders of The Maeghan and Heidi Heart Foundation! She'll 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...)


Happy St. Patrick's Day!

Well, we won't be getting to the hospital until late again tonight. I hate weekdays - Scott HAS to work, or I'll have to start begging you all to pay my bills, and I already feel like shit about the donations I've already gotten.

Yeah yeah, I know. I'm too proud for my own good, but that's me - I just don't receive well when I'm receiving on my own behalf!

Anyway, luckily it's Friday and I don't have to come home by anyone's bedtime since there's no school or anything tomorrow. And the nurse says he's resting comfortably (isn't that like a cliche or something?) but that he pulled his IV out last night. He's pretty convinced he's going to pull that vent out too if he can just get his hands to it.

She didn't say so, but I'll be he's now in restraints, again.

Um, I don't really have much to say... Just, you know, Happy St. Patrick's Day!

Thursday, March 16, 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.

necrotizing Entercolitis

Did some research on Nova's surgery and such. The condition is called "Necrotizing Entercolitis."

I still have to do more reading on it, but apparently it isn't uncommon in children who have heart problems. The doctor said it IS unusual in a child his age though - it's more common in the younger babies.

Anyway, we're FINALLY off to the hospital. Have a good one. I'll post if there's anything new.

Oh, and I actually HAVE the camera today, unlike the last couple of days, so maybe I'll have some pictures.

Anyone ever seen a colostomy? Heh, well, you probably will later.

P/T Conference

For the record, I hate parent/teacher conferences.

I don't understand how they expect me to change his classroom behavior, especially when a lot of the things they tell me he does are things he DOESN'T do at home.

My opinion is that children learn what they can get away with, and when. Then they do exactly what they can, with whom they can. He doesn't pull the crap with me because he knows I won't put up with it. So I guess they (THEY) need to do something to prove to him that they won't put up with it either. Right now all they do is call me and gripe.

They don't tell me anything I don't know, nothing new. I don't defend his bad behavior, or excuse it either. I try to convince him (with various Mommy tactics) to change his ways at school. Everything from talking to grounding to extra chores. We've tried positive reinforcement when he gets good grades and behaves properly at school. But nothing I do from here is going to change his attitude if they let him get away with bad behavior there.

So every so often I just have to go in and listen to them. Today was one of those days.

I sincerely wish I had some magic fix. Unfortunately, I don't. I mean, other than having them call me on a daily basis and report his behavior so I know daily whether he needs to be reprimanded or not... And believe it or not, I actually tried that one year, and the teachers wouldn't call or even write a note every day. It lasted about a week. Then they dwindled to weekly, and eventually stopped all together. Then, guess what? Yup, I got a call for a teacher conference, during which they complained that his behavior hadn't changed.

I'm more than willing to back them up. I support their efforts and comply with anything they ask of me that is intended to make him act right. But they often don't want to hold up their end of the deal. They just want a magic fix. Well, I don't have one. There isn't one. It's going to take work on their part, and on mine, and on Kory's part. Well, if they won't put forth the effort, I can't help them.

Wednesday, March 15, 2006

But then there's this

So we have it hard right now. We're going through hell and Nov's situation has made more backwards steps than forwards in the last 23 days. It's easy sometimes to start feeling sorry for myself and all we're going through but then there's something like this:

Mother Opens Up About Learning Newborn Has Terminal Illness

Emergency Surgery

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.

Tuesday, March 14, 2006

good grief charlie brown

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 a heart cath, but now it's on Friday.

I wish they'd just make up their minds.

Stretching Genesis

Let there be light, and there was light. God saw that the light was good, and he separated the light from the darkness.
Genesis 1:3-4

In the last few weeks we've been shoulder to shoulder with death. Cliche as it sounds, especially for the first week or so, I felt like there were three of us standing at Nova's bedside: me, Scott, and Death, staring at him, wondering who was going to win out in the end. The strange byproduct being that when you have something so dark constantly hanging over your shoulder, everything in front of you looks technicolor bright in contrast.

Today was no exception, it was a whole new shade of spring. The cherry trees are in full bloom - I have a bouquet on my kitchen table that is arguably the most gorgeous thing I have ever laid eyes on. The Bradford Pears are blooming too, thousands of cottonball blossoms that will soon fall as windswept snowflakes on grass that is a shade of green so fresh and vibrant that it hurts to look at it.

I am in love with life right now. In love with everything around me. Everything and everyone. And I appreciate all that I have and those that I know and love in a way that I never have before.

Maybe it sounds silly, but I just feel peaceful and happy today. Maybe it's spring fever, maybe it's exhaustion - maybe it's just that life is good, that my kids are beautiful, my friends are amazing, and my husband is the most wonderful man in town, and I am far luckier than anyone has a right to be.

Monday, March 13, 2006

3/13/06 quickie

I am presently watching some mindless, horribly politically incorrect stand up comedy on Comedy Central - a comic named Carlos Garcia, and Oh My God is he funny! I won't even apologize for the fact that the racial prejudice jokes fly in the face of my personal philosophy of acceptance, or my outspoken opinion about generalizations and stereotypes. This guy is HYSTERICAL! And damn it, I need the laugh!

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.

Now, on to what happened TONIGHT after I got home:
We Took off our clothes to watch some late night TV,

Then we turned off the lights, got down on the floor and did some in-the-dark web surfing.

and then when we were done with all that, we grabbed some sweets out of the cabinet

and went to bed.
For the record, she crawled in there on her own! I prefer the closet when I lock the kids in dark places - the doors are easier to lock ;)


OK, this is for my Carolina readers. I need help! We need hosts for the Tarheel Tavern! If you're interested in hosting, email me!!!

stuff Previsit 3/13/06

Pleural Effusion - a new medical term I learned this morning. Doctorese for "fluid on/around the lungs" but it's linked in case you want the doctorese definition. It's actually pretty interesting to me but I doubt many of you will want to read up on it.

I was just sitting here thinking about how life recently has been so, oh, what's the word? Varied? Variable? Anyway, my point is that I never know what's going to happen, never a dull moment. From an infant in the hospital to a teenager falling for the story of a con man kid to the joys of a new business (note: sarcasm intended) to trying to keep up with Randy's condition, which seems to change as often and as dramatically as Nova's.

Haha, I'm living a "full life." And I'll leave that at that.

I'm still trying to think of ways to benefit the Maeghan and Heidi Heart Foundation. I was hoping some of my local readers could give me some suggestions as to local companies that would want to donate, sponsor, or in some way help. Unfortunately, that hasn't panned out so well. It's a shame too, these ladies deserve the support. It's one of the purest causes I've encountered lately. Unfortunately too, I just can't get anything much accomplished with them right now. The clock is working against me most days. I have a lot of ideas, but no time to bring them to fruition.

Then there's my own charity, which has accomplished almost nothing so far. I had decided to give it up, because I just don't have the time or energy to devote to it right now. But right now, it isn't asking me for much. It sits there quietly behaving, so I'll defer that decision to a less stressful time in my life. I'd hate to dissolve it and regret doing so later. Besides, as soon as I got the idea to do so, I got an email from a previous donor (a fellow who donated a BUNCH of the photocuddlers) asking if I wanted more, because the company is going out of business (the photocuddlers co. not the donor's co.) and the prices had hit rock bottom - so I took that as a sign that I shouldn't give up on it just yet.

As for daily life - generally speaking I'm sort of clueless about a lot of what's going on with the kids. Many days I only see them for a few minutes. I try to catch up with what they're doing and how school is going and who has what projects or after-school activities, but it's hard. They miss me, I miss them. The concept of working out our priorities isn't going so well. But c'mon, you're not SUPPOSED to have to choose one child or another, and right now, that's exactly what we've had to do.

But this leads to out of the ordinary situations, for example, Kassi received a phone call the other day while we were at the hospital. It was from a boy. Boy's aren't really allowed to call her, I mean, she's ONLY 11, and she has a new "boyfriend" once a week. (Scott had her legitimately convinced until recently that she wasn't allowed to date until she was 30. She really believed him.) We walk in the door, and Ma starts the customary daily report on the evening's events and says that a boy called Kassi. gasp

Then says the kid sounded like he was 18 or 19. GASP

She tried to say it was kid from class, then it was a friend's cousin. Eventually we learned that it was a boy she met in an online game much like pictionary. The younger kids are allowed to play Yahoo games, but they aren't allowed to chat. So she and kids that are in her class play this game together. I didn't have a problem with that, even though they could chat at the bottom of the screen. Well apparently since I wasn't here and Grandma is computer illiterate, she figured she could get away with chatting with people other than classmates and GAVE OUT HER PHONE NUMBER.. Well, according to her, one of her friends gave it to this kid, who she still maintains is the friend's cousin who lives in Atlanta, but who can trust her now? So she's off the computer and off the phone and the Kassi watch is on high alert, level black and blue - which means that if she tries anything else, "so help me God, I'm going to beat you black and blue!"

Ugh. She isn't very afraid of me beating her, lol, but she does know she's in big trouble and better behave. I remember her age, and the next few years. I have a feeling that we'll be hyper-vigilant from now till hell freezes over. I think she can just give up on any hope she had on having fun between now and adulthood!

I'm all about some marathon-length posts lately eh?

I just got off the phone with Nova's nurse again. It's Linda, and we LOVE Linda (it was Vivian last night, we don't really care for her, but it's mostly just because she isn't outgoing and friendly enough for us to get a good feel for her personality - she seems perfectly capable, and that's what matters.

With heart babies, unfortunately sometimes the progress isn't so much in the numbers and graphs and charts as it is in how he acts, how irritable or calm he is, how hard he seems to be breathing, whether he's resting or not, etc... I mean, sometimes, they just need time to heal and get stronger, which is where we are with Nova since his infection has started to improve. Basically, today his improvement is all in his demeanor, based on completely subjective observation and not hard facts. The numbers themselves all look good, but mostly what she told us is that he's calm, he doesn't get so agitated when she has to do vitals and PTs, when he does get upset, he's easily calmed, his breathing looks relaxed... That sort of stuff. And, the doctors still (so far) haven't scheduled or (re-re-scheduled) the heart cath. They're feeding him a little more, I think she said 11ccs per hour now, and it'll go up again at 4, which is when we usually see him the first time during the week.