Some stuff that has happened:

- the last full week of January was full of appointments, including a trip to Sick Kids to meet with the Nephrology team and some testing for Declan to determine what's up with his kidneys and the cysts.

- when I went in to find out WTF was up with my knee (possible patellofemoral syndrome, which is only 'cured' by eight weeks of physio), got the results of my blood work. It came back normal. You should really see my surprise face on that one. *rolls eyes* The urine test did come back positive for protein (joy) but it's not enough to be worrying. At least it's an easy test to repeat.

- Declan had no protein in his urine and his blood work came back as normal. So there is that.

- having your knee x-rayed is weird. The positions you have to keep it in is very unnatural. The highlight of the entire process? Connecting with another mother who was there with her son. We both agreed that shame was something for other people, especially after you've had someone fondling your cervix with others watching. Yay, childbirth.

- tried to call my shiny new(ish) psychiatrist, since I'm running low on meds. Hahahahaha, no. Apparently, I had a consultancy appointment, and don't actually have a psychiatrist. Cue lots of swearing and gnashing of teeth. Fine, thinks I, it's back to the doc for my meds and make the appointment, which is for this Friday.

- my games continue to truck along. I am finding that Thorn's voice is nearly silent in my head, but Amy's has gotten very loud. You'll have your time to shine, darlin'. But it's not yet.

- I am currently bashing my head against getting a data recovery program to actually work. It's my fault that the information is lost, but it shouldn't be THIS hard to get it back. I am frustrated and about this close to pitching my computer off the roof.

- small victory: picked up Declan from school AND took out the recycling without falling on my ass. It's been raining since this afternoon and freezing, so not slipping and sliding is worth noting.

(no subject)

Jul. 31st, 2005 08:16 am
valkryor: (Default)
I slept really poorly last night. One of the cats (probably Franklin) was sick last night and after that woke me up, it took me an hour to get back to sleep. I wasn't even thinking of anything at all. My mind these days is pretty scattered. Some might even mistake it for flakiness. I guess I just have way too much going on right now.

We still have to call EI and tell them what happened. Which means that we're both cut off. I was mistaken when I thought that I had a few weeks before having to go back to work. Turns out, I was dead wrong...that was a pretty nasty shock.

After the funeral stuff is done, we have to find new jobs and do some serious looking for a new place. Any one of these things would be plenty on either of our plates, but all three right on top of each other for both of us is a bit much.

I don't even know if I'll be able to face the working world again. I dunno. Maybe I should. But I know that I don't want to work in anything remotely resembling the service industry. Customer Service is no longer part of my job hunting vocabulary.

(no subject)

Jul. 21st, 2005 08:26 pm
valkryor: (Default)
Not much news on the Shannon front. What they're trying to do now is wean her off morphine and the ventilator. If she can't come off the ventilator, then they'll have to put in another stent, but this time in the left brochial branch. But for now, they want to see if she'll be okay without it. She's still not in a crib, but that should happen as soon as one comes available.

One of Shannon's roommates has been moved into a private room. He hasn't been doing very well as of late and there was a big family meeting today regarding what to do next. His parents have been really dazed, but the longer you are in the CCU, the longer you recognize the look to be what it is: stressed, tired and very very worried. It hasn't been easy on them. I hope that, for good or ill, something happens soon.

And now, a meme... )

(no subject)

Jul. 8th, 2005 09:48 pm
valkryor: (Default)
I'm feeling better today. I think I just had to hit rock bottom before bouncing back. I was even giddy and bouncing off the walls in the hospital. The manic depressive like mood swings are stress related. Yippee. :P

No news, really. Shannon's bleeding less today, but they're not sure what they're going to do about her lungs. Her right one is okay, but her left has collapsed. As long as she's on the ECMO, this isn't an issue. But she can't be on this indefinitely, so something needs to be done. And, to make things more interesting, they found a bug in her blood and there might be an infection in her lungs. The cultures haven't finished growing yet, so they're not sure. Since she's on a boatload of antibiotics (her chest is still open), the infection is either viral or resistant. I hope it's viral. A resistant strain of bacterium won't be pretty (and it scares me nearly to death).

It would be ideal if they could get her lung reinflated with compressed air, but with the amount of compression in her lungs, that doesn't seem to be a viable solution. A stent, while last resort on account of the stents in her pulmonary arteries, is more ideal. But having metal rubbing against metal with only delicate tissue between them is a real possibility, so that is a last resort. The problem is we're now down to last resorts to get Shannon off of the ECMO.

And as soon as her lungs are up and running, they can finally wean her off the machines and finally figure out if the last heart surgery they did on June 30 actually worked.

I got to put up some pictures of Shannon before she went into the hospital, partially so the nurses and the techs and the fellows and the doctors could know what she looks like not covered in wires and hooked up to machines and partially to remind both of us what a vibrant happy little girl we have and that she'll be like that again so we can take more pictures full of smiles.

(no subject)

Jul. 3rd, 2005 06:33 pm
valkryor: (Default)
I feel so empty. And I'm finding it harder and harder to go to the hospital, but everytime I leave I'm afraid something else is going to go wrong. I don't know how much more of this I can handle. But it just never fucking ends.

I don't want to lose my baby.

(no subject)

Jul. 3rd, 2005 09:11 am
valkryor: (Default)
The pager went off twice last night. The first time to tell us that they were going to be switching to the oscillator and the second came two hours later...they had to put Shannon on the ECHMO (heart-lung machine, or more formerly extracorperal membrane oxygenation). After nearly two weeks intubated in the CCU, her lungs are failing.

The ECHMO is a last ditch attempt. If she can't handle going off of it, then there is nothing left.

She can recover from this, the only question that matters is will she?

(no subject)

Jun. 30th, 2005 09:38 am
valkryor: (Default)
And just because my life wasn't messed up enough, I now have to deal with the menstrual hormonal rollercoaster on top of all of the hospital funness. Oh joy.

(no subject)

Jun. 29th, 2005 10:01 pm
valkryor: (Default)
I'm getting so tired of the uncertainty. Things didn't go as planned today, but I really don't feel like updating that bit, so I'm leaving it to my other half.

I don't know what to do or what to feel or how to be anymore.

"I don't know"...just three little words. And I can't even begin to describe how much I hate them.

But it's the only thing I have left anymore that makes people stop asking questions.

And I'm starting to hate myself for not having anything more to offer except those three words.

So please, please don't ask me how I'm doing. I honestly and truly do not know.

(no subject)

Jun. 28th, 2005 06:37 pm
valkryor: (Default)
Surgery happened. It was another eight hours waiting in a lounge that I have grown to hate.

On the good news front, Dr Calderone was able to unkink and reposition her pulmonary arteries to increase blood flow and oxygenation and decrease the pressures in her head. Shannon may have to go in in a few months time to have another stent put into her left pulmonary artery (the aorta is compressing it with each heartbeat), but that will happen in the Cath Lab which is not as intrusive or as traumatic as open heart surgery. Shannon's chest is still open, and, if all goes to plan, that should be closed at bedside in a couple of days.

On the bad news front, we have no idea when she'll be out of the hospital and we'll be out of Toronto.

Yesterday, because we both needed some retail therapy, [livejournal.com profile] fuzzpsych bought booze and music and I picked up a couple of t-shirts and two pairs of skorts (full skirts with cotton undershorts sewn right in...ingenious!), since I only have long pants and it's really really fucking hot again. One of them is a size 22! Which makes me feel good, since I'm usually a 24 in bottoms at Addition-Elle. It's a cheap ego boost, but right now I need as much as I can get.

More Surgery

Jun. 27th, 2005 12:47 pm
valkryor: (Default)
We just found out that Shannon needs to go in for another round of surgery. Her pulmonary arteries have too much excess tissue and it's starting to kink and fold in on itself a little like an intestine, which is not ideal. The hope is that this will solve the low oxygen saturation levels and aid in her recovery.

We have no time limit for the surgery itself, since this is a tweaking of sorts and not a standard procedure. It could take three hours or ten. We've already been told by Dr Calderone, the surgeon, to not watch the clock.

Poopie.

EDIT: The surgery is set for tomorrow (Tuesday). Shannon's first case, so if it all goes according to plan, she should be in the OR at 8 am. Sorry about the confusion on the time.

Post-Op

Jun. 23rd, 2005 01:57 am
valkryor: (Default)
We just got back from Sick Kids. Even though Shannon was first case and went into the OR at 815, it didn't go well. Technically, the operation went fine. But the pressure in her lungs was too high and it took a long long time to get it where the surgical team wanted it. Since there was nothing we could do, we came back to where we were staying because sleeping on the hospital couches isn't what we needed right now.

I almost lost my baby today.

The same quote played over and over in my head and it made me angry because they felt hollow and cheap, even though they comforted me once upon a time.

"You get what everyone gets. You get a lifetime."

(no subject)

Jun. 22nd, 2005 05:02 am
valkryor: (Default)
My stomach's in knots; all twisted and nauseous. There's a full moon outside this window as I type this. The sky is just starting to get lighter as the moon, now the colour of gold, is sinking westward. And for once, the Gardiner is moving along quite nicely.

If the surgery gets put off again, I will go mad.

Dread

Jun. 21st, 2005 01:16 pm
valkryor: (Wings)
The lump of dread is sitting in my throat now. Hopefully by this time tomorrow, it will be done and over with only the wait for recovery.

(If there's one more set back I will fucking scream. I can't do this waiting thing anymore. My sister and her boy have been great, but it would be just too fucking much.)

Poopie

Jun. 20th, 2005 10:51 am
valkryor: (Default)
Got a call from the hospital this morning. Shannon's surgery has been moved to Wednesday now. Trying very very hard not to scream in frustration. I just want this to be over. I'm sick of the lump of dread sitting in my gut.

(no subject)

Jun. 18th, 2005 08:57 pm
valkryor: (Default)
I feel better today. I dunno. I guess I just needed to get the ick out by letting others know that I was feeling bad.

Thank you to [livejournal.com profile] clawfoot, [livejournal.com profile] lovecraftienne, [livejournal.com profile] the_daily_rant, [livejournal.com profile] robertom for the kind words, and also to [livejournal.com profile] joncanuck and [livejournal.com profile] meowster for being on Messenger when I needed someone to be there. Damned near everything about this entire experience is a great big bowl of ass sucking cherry pits and being in limbo only emphasizes the bad bits.

So. Um. Yeah. Thanks and all that. :)

I'm so stressed out my eczema is coming back on my left pinkie. Just what I need. :P

And until the wee one is in hospital, no movies for us. Sorry about that, [livejournal.com profile] clawfoot. :( But if you want to stop by and hang out or something, that can happen. Just give us a call.

In other (and probably more important) news, Shannon rolled over for the first time yesterday. It seems like she's late, but if she's anything like my sister, she's doing things in her own sweet time. :)

(no subject)

Jun. 14th, 2005 03:29 pm
valkryor: (Default)
Today was a complete and utter cock up. Why? Instead of being at Sick Kids right at this very moment waiting for Shannon's surgery to finish, we're back at my sister's with the baby, having wasted our entire day for no fucking reason. Well, there is a reason. But it should not have come from the surgeon. It should have come from one of the two nurses who saw Shannon hours earlier. The reason: a heat rash. Because of the nature of the sugery, they don't want to risk infection. Which is fair enough, but why did the nurses just take heat rash as a good answer and not do something about it hours ago?

Mini Update

Jun. 13th, 2005 06:45 pm
valkryor: (Default)
We made it to Toronto okay. It's very cool to be on the 26th floor (well, not really...it's more like the 22nd because of the numbers missing) in the middle of a thunderstorm. Ye gods, is air conditioning a wonderful thing! :)

Tomorrow is going to suck ass.

(no subject)

Jun. 12th, 2005 08:53 am
valkryor: (Default)
Time to get going on my day. The baby's starting to make little hungry noises but she's still asleep, so I don't really know how much time I have.

I've just put the kettle on, so now I *know* how much time I have.

Yesterday, I did a pretty thorough clean of the bathroom and (with [livejournal.com profile] fuzzpsych's help) a pretty decent job of the floors, including a general straightenting up of the livingroom. That leaves the laundry (it's going to be a big job...big enough to split over two days) and a few odds and sods before we have to pack and go to Toronto.

I really really don't want to go. Everytime we go out somewhere, strangers comment on how healthy Shannon looks. Most of the time we just nod and smile. We *know* she's not healthy, and that her colouring is due to a still shiny-out-of-the-box new hybrid procedure and some heavy duty heart medications. But this was only a temporary step...now the real fun begins.

(no subject)

May. 31st, 2005 06:09 pm
valkryor: (Default)
I'm doing some laundry and I noticed that the furnace was on AGAIN! WTF? It's not that cold, even in the basement apartment. And if you are cold, put on a sweater or something, but for the love of Pete, don't turn on the fucking heat until October.

With the last of the money from [livejournal.com profile] fuzzpsych's grandmother, I went to Zellers and bought a Jolly Jumper. Shannon's not quite sure what to make of it, but she doesn't scream when she's put into it, so I'm going to take that as a positive sign. She should figure it out soon enough, and then she will scream, but only when we're taking her out! :)

The surgery date is looming ahead. We're both under constant stress and unease. The next two weeks are going to be maddening...not all anticipation is good. Adding to this is another layer of stress coming from my mom. When we told both sets of parental units about the surgery and about our wish to not have them come down to the hospital and wait with us, my in-laws agreed to that without argument and will only come down when it's a good time for Shannon to have visitors, but my mom is being argumentative.

Let me set the stage for Shannon's first heart surgery (PDA Stent and Bilateral Pulmonary Banding...also called the Hybrid Procedure) on 2004 Dec 07: the grandparents (my in-laws and mom) want to be there. I would rather that they didn't, but [livejournal.com profile] fuzzpsych wanted them to be there for support, so I relented. I don't play well with others at the best of times, and being under so much stress, I couldn't handle anyone, so I went into the CCU waiting lounge across the hall alone. [livejournal.com profile] fuzzpsych felt like he was being pulled in two directions and he also felt that he had to entertain the grandparents while at the hospital. I felt pressured and high strung for most of the day until my sister stopped by in the late afternoon. I started to calm down. While my sister was there, the grandparents left to go home (thank the gods) and after seeing Shannon one more time, we went back to my sister's place with her on the subway, had a bite to eat, then met up with [livejournal.com profile] clawfoot and [livejournal.com profile] epi_lj for the Spongebob Squarepants Movie.

All in all, not a very pleasant experience. We both had enough on our plates with the Hybrid procedure without [livejournal.com profile] fuzzpsych having to deal with family and me trying to avoid them. It clearly didn't work very well. This time, we decided to do this one alone, calling with the result as soon as we knew what was going on.

But that's not good enough for my mom.

When we told her the surgery date, she argued against our explicit wish to not come to Sick Kids. She's even using strong arm tactics to guilt/pressure my in-laws (who are being incredibly supportive about this) into changing their minds so that she can be there. I understand that she's terrified. But she has no right to make this all about her. She made the case that if something happens, she wants to be there to say goodbye. But this is open heart surgery with a heart-lung machine and the whole works. If something happens (touch wood that it doesn't), it will happen fast. There won't be time for the kind of goodbyes where Shannon can hear them. It will be too late for that.

I know it's morbid and negative to think like this, but this is why they have survival rates for surgeries.

I want her to understand that we're not doing this as a punishment or to marginalize her importance in Shannon's life, but that as her parents we have to be as focused as possible and we can only do that without distraction from the parental units. [livejournal.com profile] fuzzpsych is going to talk to my mom about this sometime this week. If I went with him, it would become a heated argument and it wouldn't get anyone anywhere.

I'm just don't want this to turn into a grudge. My mom and her brother no longer speak to each other because when he needed her to be there for him, she was too busy with something else (this was 7 years ago!). It's stupid, but that's all it takes, and I'm worried that this whole surgery thing is going to cut me off from my mom and poison the it's-now-finally-a-good relationship I have with my sister (which is very bad, since we'll be staying with my sister and her boyfriend while in Toronto).

Now my tummy is urpy. :P That's enough or I will get an ulcer.
As predicted, yesterday was truly craptastic.
Read more... )

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