Wordless Wednesday

Taxes. Changes. Determination.

It's tax time. Deadline is Wednesday. The e-filing system I use doesn't store passwords and as usual, I have no clue what mine is and it's not a variation of the standard I use for most websites and my so-called *hint* is of no use either! So I have to start all over again and get that basic stuff in before I can plug in all the numbers.

I checked in with the Barracuda to ask if I am supposed to file jointly with the SU. I assume I do as we are in marital purgatory rather than in any real legal state, and as far as any one knows we are *together* so status quo I figure. Shall wait and see what she tells me.

RT is busy changing rooms with Rebel. Rebel doesn't want to go back to her room. She's afraid all the bad stuff from going to the hospital in December will come back to her and just prefers to get out of that room. Surprisingly, RT agreed and has slowly been moving things about. SU hasn't helped her a bit and I've been away every day, so this weekend, she and I will finish up the move and get things finished. I have to hire a handyman type to come in and perhaps paint and put up the trim that has never gone up because SU just can't be bothered. It will be done my way on my time and at least I know it will be taken care of.

Rebel is doing well. She gets stronger every day and is coming around with determination - of course. She is eager to come home she says, but also a little wary after living in the hospital bubble for the last four and some months. I'll be off with her for a couple of months til SU is done school for the year.

Then we shall see how useful he proves himself to be around her.

Getting used to a "slow" heart beat.

It was a pretty sore Saturday.Rebel was a bit overwhelmed with the pain and didn't have a great day in spite of the fact that she continues to do really well. The chest tube was removed and there was a fair bit of ooziness during the day.

The catheter was a major embarrassment and the thought of talking a stroll through the ward while having to have one along side her - lovingly nicknamed - a crotch tube - didn't appeal much.

Today proved better however as the catheter had been removed later on Saturday which meant getting up regularly. When her nurse changed her dressings, she found the incisions were healing very well. And Rebel followed up by doing one 120 metre lap around the ward.

Rebel was surprised that after standing to wash up, brush her teeth and use the bathroom that she wasn't at all tired. Nor was her heart racing at its usual 130 beats per minute. Getting used to a "slow" heart beat, between 85-90 beats per minute has been an adjustment. She has been so used to a racing heart that she is getting used to normal.

Visitors were coming round and this certainly helps keep spirits up.

She had had a fight with the BF - he doesn't like that fact that she male friends, many of them quite taken with her even in her post surgery no make up, unwashed hair state of affairs. Didn't he pull the trump card I have fully expected him to pull... "I've been with you the last ten months as you've been going through this. Where have all these other people been?" If he had been in front of me I no doubt would have gone up one side and down the other. As it was, I told Rebel that that was not fair for him to use her illness as a way for him to demonstrate his own feelings for her. And she was *never* to allow him to use that line to manipulate her. I am happy to say she caught that one, but apparently, the previous evening was not a good one for her. He is more of a boy than a man, and unfortunately has many tendencies that look suspiciously like her father's - the SU!

We shall see how this progresses as she recovers.

Place Your Bet.

Surprising!

I arrived at the hospital today just as Rebel was being transferred out of the SCICU and back to the cardiac surgery ward! How surprising is that!

They took out all the neck IV lines and she has her PICC line in her arm. The chest tubes will probably come out tomorrow and as she loses fluid the catheter will probably follow.

More beaming smiles as she came up to the ward and the nurses all clustered round to welcome her back. It astounds me how well she is recovering. Rebel doesn't think so, because unlike the first set of surgeries at Christmas she is very much conscious and moving and feels the pain of the surgery incisions. Sore chest, sore groin and a few other places. Cranky! Very cranky.

She has started on her anti rejection meds and has a whole new regime to follow for the rest of her life.

Anyone want to place bets on how soon she will be home? Need that poll thing again I think.

Pretty soon we'll be back to our regularly scheduled ennuie with the occasional update of course.

Thursday Thirteen

In honour of the wonderful people at the Heart Institute, who are ALL BEAMING as the Rebel continues to recover. Sitting up at the side of her bed less than 24 hours post surgery. Talking a blue streak, complaining about the chest pain, because the morphine infusion is pretty light. BUT she is gaining strength and moving. It's amazing! She continues to improve. Here's why she is where she is today

The 13 (with latitude) at the Heart Institute who believed, who make a difference. Hope I covered all the categories.

1. Doctors- surgeons, cardiac specialists, anesthetists, infectious disease specialists,
2. Nurses- intensive care, charge nurses, nursing coordinators and the ones who watch The Hills with our girl.
3. Perfusionists
4. Respirologists/Lab technicians
5. Physiotherapists
6. Social worker
7. Psychiatrists/psychologists
8. Dietitians ( in spite of the food)
9. Radiologists
10. Porters/Orderlies
11. Cleaning staff
12. Ward clerks
13. Volunteers

"A Perfect Surgery"

Rebel's surgery went very well. "A perfect surgery," said one of her surgeons. All in all they were nearly done by about 7 AM after being in the operating room since 1AM.

The VAD and ICD( pacemaker /defibrillator) were removed first of all before Rebel was put on the heart/lung machines and the heart surgery could begin. There also had to be extra precautions because of the MRSA virus.

Given she has been on blood thinners there is the possibility of bleeding and that is all being carefully managed.

Rebel is back in the intensive care and recovery rooms. They expect to take her off the breathing tube later today or tomorrow, and they say she has been very responsive.

The new heart is doing very well. We know the donor was an 18 year old young man killed in a car accident somewhere outside our city, about an hour away by plane at least. This is all we are allowed to know.

We will write the donor's family a letter to tell them our story in hopes that it helps comfort them. The letters are forwarded by the Trillium Network, the regional body in Ontario that manages the organ donation programme.


I am now going to try and get a little sleep this afternoon.

Happy Birthday, Rebel!

Praise the Lord for the blessing
of a new heart for our girl on her birthday.

From Marie:
"The perfusionist came with the charge nurse from the ward around 7 AM to tell us that she was `going like a pony!` At this moment she is still in the OR as they are waiting to ensure all the bleeding subsides and that all continues to go well. So we now want to ensure that that her body doesn't reject the heart. All seems to be going very well."

Please continue to pray that she does not reject her new heart and that her recovery goes well.
Remember the donor family as well in your prayers. The gift they have given is most amazing in light of the gift they lost.

Thank you so much for your continuing prayers.

A Heart.

Just in from Marie:

"I am at the hospital and we have a donor heart!!! Just found it. If all is well, and the heart after inspection is good, Rebel will be under going transplant on her birthday- shortly after midnight. Please say a prayer for the donor and the family as well as successful surgery."

I will update as I hear more.


Let's storm heaven on Our Girl's behalf as well as praying for the donor family.

Poll Results.

Finally Friday

But yet... Friday we still wait. And Friday becomes a day like any other day, until my Rebel has her life back.

She is healing once again from another drained abscess. The transplant coordinator is bugging the hell out of her and Rebel told her she really didn't need to see her every day because she keeps bringing negative news.

The charge nurse, who was the enemy, ha now become the chief ally. How that turn around came about, I'm damned if I know but a strong ally helps the girl. In spite of some pain where the drainage hole is healing she is doing her physio and doing the best she can keeping her fluids up so get strong.

The BF - while devoted - can be a RAMB-in-training! 'I'll be there at 3' he promises and at 6:30 the girl is still waiting for him to bring supper. At which point, I take back control and tell her I will head to the cafeteria and find her food, given the BF's inability to say one thing and mean it. It's frustrating for the girl. And words need to be had with this nearly 30 yr old man who for the most part, behaves as if he is a pimply 14 year old dorky adolescent. Inexcusable really. The Rebel plays him like a good celtic fiddle reeling him around. Good on her I say! The BF will not know what hit him when the Rebel has her heart and life back and is ready to move on with life. She will be a force. And I pray then after all the rest of it, that he doesn't hurt her too badly. She is much better than he is. And he is NOT good enough. But I step back from this one, and allow her dreams of wedding dresses and pretty shoes since it helps her get through the day.

The SU - was invited to - of all things - a toga party tonight. The 30 year old engaged and living together singletons are throwing a toga party to celebrate birthdays this evening. I will be curious to see which sheets he takes. He's a rather greying hirsute man with skinny legs and of course, older than the average 30 yr old, so as usual, he may not don the theme of the night attire and will show up in his regular jeans and t shirt slinging his folk guitar. It's also his regular hockey night, and it is a very rare occasion that he misses this unless he is sick or in pain of some sort.
Maybe I am missing something but aren't toga parties what you do when you are 19 and living in a dorm? Are toga parties something that working people of certain age do? Me? I would host something a little more upscale - call it Feast of Ancient Rome party... costumes of the day required: centurions, senators, roman royalty all invited. But Toga party does imply a certain debauchery doesn't it? A la Animal House. So SU may go and feel the need to be 25 again and show up at home Saturday around 7 AM .

A great example for the RebelTweeny isn't it.

Thursday Thirteen

13 Things on the Grocery List - so far

1. frozen juice.
2. lemons- for the daily morning hot water and lemon starter!
3. egg
4. green garbage bags
5. Kraft salt free peanut butter - blue label - craving PBJ sandwiches
6. Old Dutch Lightly Salted Potato Chips or Miss Vicki's No Salt
7. chicken
8. salad stuff - romaine lettuce not iceberg
9. pink grapefruit juice in carton
10.red seedless grapes
11.white cheddar cheese
12.Pinto Grigio
13.Sol - for the stoop out back today... it's going to be balmy! +70 F today!!!

Wordless Wednesday

Outlined Thoughts.

Rebel had another infection on Friday, but this time it was drained quite quickly. It slowed her up over the weekend, because of the dressing changes and some "leakage" but at least it didn't take as long to be dealt with.

Rebel also had a meeting with everyone who is key to her care. She was getting mixed messages about what the direction was for her and the psychologist she was talking to suggested she get everyone in a room together to hear what people were thinking, and more importantly, hear what she was thinking.

This was helpful. The doctor outlined his thoughts, and told her what he needed from her as did the charge nurse. I believe Rebel felt better after this little chat with everyone. She needs to continue to gain strength, to keep her fluids up to avoid alarming the VAD and to eat properly. he doc gave her an idea of what her surgery would entail and why he either would or would not be in attendance when the time came. They do have plans in place and depending on schedules a very knowledgeable practised group will handle her surgery.

The weekend was quiet. Rebel is seriously tired of hospital food but realizes that fast food isn't the answer either. I am bringing more meals from home to help her with that. She weighs in at a respectable 125 pounds so that is good. And she is learning how to be patient and yet learning how not to dwell on the obvious either. A tough job for any of us.

The SU manages to show up between hockey play off games. He doesn't really stay very long with her. I guess between sleeping in until 1 PM on the weekends and doing what ever it is he does at home, he stays about an hour and that's it. He did buy a parking pass for the hospital lot, and I tend to use it, which may be one excuse for him, but really - I suspect he doesn't like the BF. Why speculate. I do know the past couple of days when he does get home he races to the tv and we don't see him the rest of the night except between periods.
whatEvEr I guess.

Allaying Her Fears.

Rebel has had a few quiet days. I think now she's so aware of being isolated and stuck in her room that she gets concerned when things change with her body and her heart. The nurses take every thing she asks about very seriously - which is great as she does know herself very well.

The doctors do their best to allay her fears and concerns as well.

Every now and again though someone says something and it does set her off a bit. So with a visit or two with the hospital psychologist it was decided that a meeting with health care professionals, Rebel, the psychologist and who ever else is involved in her care will help Rebel deal with things that upset her, worry her, and even make her feel good.

Her machine was alarming a bit today when she was walking and this had her worried. The perfusionist and the doctor believe it's because her fluid levels are not high enough, she's not drinking enough to keep blood flow moving adequately. So... whatever goes out.... has to come back in. They put her back on a heart monitor just to check it out, but all her other "numbers" and charted things... are A-OK... so as long as she drinks a lot they believe she'll continue to be fine.

She also has a stationary bike in her room to help build strength. She was on it for a few minutes today and seemed to do all right. A little bit more every day will help her be strong for when she has her donor heart.

Not too much going on with the ennuie side of things. The SU has a whack of money in the bank and seems to be taking over the payment of the bills... a first! Ever! So as he keeps paying the bills I too am attempting to build up my stash and need to start an investment fund away and apart from the joint ones that are part of the ennuie. I am doing a leave with income averaging at work so I can take time off with partial salary when Rebel gets her heart. That way I won't need to burn through any more vacation or sick leave. So for the next year I am working at partial salary too. Should be fun!

I've got to hit up the SU to pay for the crappy hospital tv cable and telephone as well and also for whatever clothes RT wants now because of my short term diminished salary. In fact, I think he needs to pay for most everything these days. This is truly a turning point because for the past 25 years, I've always had to deal with the majority of the bills and finances. The mortgage was signed off again. I took a one year term this time. Probably not great, but I did some negotiation with the bank. She knows I am not going to leave at this point, til I have outright ownership and have to re negotiate the entire mortgage, but she also knows if she doesn't give me a rate I want, I WILL leave rather than considering this particular bank for a new mortgage when the time comes.

It's always about the negotiation isn't it.

Thursday Thirteen.

13 items in my Hotmail in basket!
(With thanks to Blondie for the idea!)

1.FW: How well do you know me?
2.[Eater's Digest] Spring Pick a Chef is Here
3.Fibromyalgia Relief, “D” Helps Babies, Sleep/Weight Gain, Quick Tofu Stir-Fry and more!‏
4.Mystery Book Club-Commission-4‏
5.Understsanding XML- Reinventing Wheels
6.Up to 50% off Canada. Low fares to international and sun destinations.‏
7.Important news from Spring conference 2008 - Nouvelles importantes de la Conférence du printemps 2008‏
8.Who you are makes a difference.‏
9.Awesome April Offers‏
10.Forgot Email Password
11. Friday April 11, - Jane's house - CONFIRMATION‏
12. Get a Free Gift from Chatelaine!
13.Fwd: guiness dip ‏

Wordless Wednesday

A quiet weekend passed.

I didn't go to church on Sunday. I think my lack of sleep caught up with me. I turn my alarm off on the weekends, and Sunday morning, after the initial "oh... it's only 6:30 AM" passed by, I fell asleep again and didn't wake up til nearly 10AM. I couldn't make myself hit the shower, eat something quickly and get there by 11:15AM. First time in months I haven't been.

Had a quiet afternoon with the Rebel at the hospital. Her room is right across from the nurses station and during the week its some noisy. Come the weekend, and things are a little calmer and quieter. She had a fixation on watching The Grinch, with Jim Carey, so that was the movie of the day. Must have something to do with missing Christmas this year. We took her outside in the afternoon, but she found the wind cold in spite of the sunshine. I should have left the lining inside her coat.

The SU and I were given an orientation on how her machine works. It's a pretty basic thing and simple once you know. It runs on power or batteries or back up batteries; a compressor and back up compressor. It can even run on a car electrical system (my lighter is broken - better get that fixed or she can't come in my car!) and there is a hand pump if we ever get totally desperate, which, apparently, has not happened to this machine.

Rebel wants to switch bedrooms with her sister. I think she's afraid of remembering the night she went to hospital if she comes back to that room. Rebel Tweeny said she'd do it. I think it has something to do with the roof jutting out of the window of this room, and RT remembering Rebel and her friends sitting on the roof partying. WhatEvEr- I think it also means re painting both rooms, but I figure that's a small price to pay for keeping Reb's mental health intact.

Every now and again, the nursing coordinators, the ones who are like Customer Service Reps - the case manager sort of between patient, families and the health professionals - will ask me how I am doing. Most of them are well aware that the SU and I were separating as Rebel's illness was playing itself out. They take me aside and ask me if I need anything, if I am doing all right. On the odd occasion when the SU has been around, he hasn't really clued into these private conversations. Of course, the nursing coordinators are all women, and two of them that I know of are also divorced. I have people looking after me everywhere. It's nice to know.

A Regular Chatty Cathy.

Rebel has been having pizza cravings for the past few days. I believe in the past few days she's probably eaten two whole pizzas. Perhaps I am exaggerating... just a little.

Another walk outside yesterday was good. Getting out there into the fresh air can only be a good thing.

She saw her first cardiologist in the hall - the one who directs the transplant programme and the heart failure clinics. She had a good chat with him. He will be taking her back as a patient post transplant. She rather likes him a lot. The two of them talked a little about post transplant expectations and what life would be like. Rebel trusts him implicitly and really likes him a lot. He is originally from Syria and has a somewhat gruff way about him but he is a straight talker. I think he rather enjoys his chats with Rebel because she treats him like a regular guy!

I notice whenever Rebel gets a unit of blood for low hemoglobin she turns into a regular chatty Cathy and her mood is pretty perky. Clearly hemoglobin levels that are where they should be seem to make a difference for fatigue levels and more. Two sets of laps around the ward today also kept things interesting as Rebel chats with other patients, gives the nurse a hard time and generally keeps track of things going on around her.

We are both into Brain Age on her Nintendo DS. I've gone from a brain age of 70 something to 28 doing all the math calculations, time lapse tests and more. On the other hand, I STILL can't get passed Level 7 on the diner dash game. Rebel is threatening to give the game back to her best friend. I will have to buy my own DS ( a red one) and my own Diner Dash game too and continue torturing myself at home rather than ignoring my daughter at the hospital. Reb keeps asking her dad to play Brain Age, and he refuses... What is he afraid of. It's just a silly game. But he won't even try. I think he's afraid of looking stupid or something. Never bothered me!

RebelTweey and i can have some kind of DS conversations with the DS which Rebel and I can't do. The DS has warning notices all over it that say it shouldn't be used where there is sensitive medical equipment. seriously.

It doesn't look like I can go to my professional conference this year... I am on the national board and this is now two years in a row I won't be able to attend. I asked the executive director if I can get hooked in virtually for our big meeting where I need to give a fairly serious presentation. It looks like it should be easy enough to do. We have a web cam, but no microphone on this computer of course,but I don't expect that should be a big deal to figure this out.

This should be fun.

13 on Thursday

1. While our Rebel continues to get stronger, I am thinking that the discussion and talk about *discharge* to wait at home might just be a bit premature. AN IV pole at home? On the second story? Not sure this is a great idea. We're taking this one on.

2. Rebel's birthday this month... My baby turns 20. Hard to believe. How to celebrate?

3. The SU's cash flow seems to have grown *quite* substantially the past few months... hmmm!

4. People who don't get it... *really* don't get it. whatEv!

5. Car rattle - double hmmmmm!! dump the Taurus get the Mustang GT convertible?

6. Rebel has had dreams that seem to have come true... She asked me if I was going away on business any where... I told her no, not going on the planned Vancouver trip in May. triple hmmmmm!!!

7. Goodness... it's a theatre night tonight! I nearely forgot! Yes Marie... today is Thursday... all day! That's why we all it 13 ON THURSDAY!

8. Does a certain SU *really* have to start cooking at 10PM at night? I don't know... but I hate the smell of food coming into my bedroom between 10PM and midnight! yeah yeah... I've asked... he's too busy... watching The Habs... or something... And the food isn't even for us! He's planning on going to a party with the kids he hangs out with.

9. I think I have a pair of boots at the shoe maker. I think they've been there since last year. I just found the little claim tag in a wallet I haven't used... since last year. sigh....

10. I am Diner Dash - Flo on the Go obsessed. I can NOT get past level18 on Flo on the Go or past level 7 on the DS no matter what I do or don't do. It is making me insane. and never mind the repetitive strain injury in my right hand!

11. However, my Brain Age is down to 38 ( up from 37) and I detest the triangle math test.

12. I need to buy my own DS. A red one! DS needs to learn how to decipher my hand writing!

13. Counting down to my Saturday morning at Le Nordik Spa. Massage and baths. Hot cold, Hot cold, Hot cold... where's the bar!?

Wordless Wednesday

A Girl Needs Air!

Things seem to be okay with the Rebel. She has been having a few down moments... "why me; I can't keep doing this; I'm tired of this." So I asked the nurse to have the psychologist pop in on her... WITHOUT her knowing it was me. More "we heard you've had a tough week and I wanted to check up on you... how are you doing Rebel girl?" kind of approach. The nurse said she'd get on it this AM.

And who can blame the girl? She's had a tough go... with all these hurdles coming at her.

The infectious diseases team doctor came in to see her and was pleased with how she is doing. They're probably going to keep her on anti-biotics, because they worry about one little bit of bad bacteria attaching itself to her VAD - either inside or on the drive lines and reinfecting her blood. Rather than risk another culture growing somewhere inside, keeping her on meds is the better precaution. It also kicks up her status on the donor list to very top priority as well.

The chief perfusionist has bonded with Rebel. She has teens at home and seems to have forged a good relationship with my girl. She wants to take her out for fresh air today and barring bad weather... it's going up to 12C (low 50s) for a bit today before we head back down to 0/-1 (low 32) this afternoon, she may be able to get out. She's not allowed to touch anything, or do too much but I think a car ride and some fresh air can only be a good thing.

Mortgage is renewed. I went for the one year and negotiated it at the 6 month open rate. SU said nothing. I am counting on the one year rate to give me some breathing room. I can only pray that by this time next year, things will be significantly positive and better for the whole family.

The young one keeps expecting me to take her shopping for spring clothes... but when I ask for help around the house... even letting her choose her chores... I can't seem to get very far.... so rather than American Eagle.. it's gonna be Giant Tiger and Winners!