Moving Sloowlee Forward.

Rebel is on the mend. After being taken off the transplant list temporarily, she was listed again after the first dressing change of the infection site. She felt a sense of relief.

Things were pretty quiet on Saturday. I was the only one in to spend time with Rebel. Both SU and the Boyfriend have colds or bad flu bugs and are not coming near the hospital for now. Friend was away at a Sens game in Boston.

The site where her doctor made 2 incisions to drain the infection are healing very well. After some messy draining, the nurses are satisfied with how quickly she is healing.

They use this long ribbon like antiseptic packing in the area. This had to be removed and replaced. As the nurse was removing it on Friday, the doc stuck around to supervise and kept saying... "more.... more.... more" and the nurse kept pulling and pulling and pulling out this ribbon. Rebel couldn't keep her eyes off this stuff. She even took pictures and I am sure once she is up to it, they're going to end up on her Facebook profile along with the picture of the two holes in her belly.

We watched the Nancy Drew movie on Friday evening, and yesterday it was Enchanted. After the movie, we went for a one lap walk around the ward, and that was pretty much the extent of Rebel's day. We're moving sloooooolllllleeeee forward again.

It's been six months since I renewed the mortgage. The renewal notice sat on the table for a couple of weeks again. I went for the one year renewal and no lawyers involved this time. I will tell him the SU to get himself to the bank tomorrow to sign the renewal papers. Nothing like doing this at the last minute. What EvEr.


And we continue to wait..... for just the right heart.

Holding Down the Fort

Rebel finally had the CT scan in the middle of the afternoon after she was told it would be in the morning. It seems outpatients are booked up throughout the day and patients in hospital don't always get priority. Thank goodness the transplant coordinator got on the phone and talked to a few managers to make them understand that this just wasn't *any ole* CT scan.

Once that was done she had to wait for her doctor, who had been pretty busy in the operating room most of the day again.

The chief perfusionist, stuck around rather than heading home out in the boonies a good hour and a half out of the city. She accompanied Rebel into the operating room and stayed with her. No doubt they needed a perfusionist in any case, but my guess she chose to stay
The entire procedure was quick and Rebel was back in her room within an hour. All done by about 8:30 PM

By this time, after having to fast all day she was pretty hungry. the SU keeps sending all kinds of stuff to the hospital so she had an eclectic mix of snack food and a glass of milk which should get her through the night.

Hopefully she'll sleep well and over the course of the next few days she will beat off this infection and finally get rid of it.

SU and the girl's BF are both fighting off colds or flus or both. Neither of them were around today. I pretty much held down the fort. And I STILL can't get past Level 7 on Diner Dash on the DS I must have spent two idle hours playing around on that thing... what a waste of time! What else could I do though.

RT seems to be holding things all right. I was thanked for making supper twice this week... I looked around to make sure she was talking to me and not some one lse. On the other hand it would seem I am no longer *mother* but it's been noticed that I am identified her FaceBook pictures as "the birth giver" What can I say.

Me? I'm beat too. But I take echinacea all winter in two week cycles, and eat my vitamins regularly so I am hoping in spite of some lack of sleep I will not get the germs around here.

I have my wee dram of Dalwhinnie's and a book and I'll be back tomorrow or the day after with yet something else.

Pray it's positive.

Wordless Wednesday.

Better.

Just a quick update for now. As of yesterday afternoon Rebel was doing better. Her eye was bothering her a little but the double vision was gone. Appetite not so great but she did get up and do one lap around the ward yesterday.

The staff doctor also removed the wire attached to her internal defibrillator. With the thing turned off and prospect of transplant, there was no need for it. She said it was *that long!* holding her hands about 18 inches apart.

We shall see how things progress today now that the Easter long weekend is done and her surgeon is back from a few weeks of vacation.

Weekends are always Weird.

Rebel woke up on Easter Sunday morning with blurred vision. It freaked her out. Her speech was a little odd too. She couldn't find her words. They quickly had neurology assess her and didn't find anything. All seemed fine. They're not sure what the deal is with this. As the day progressed the blurriness and double vision got better but Rebel was really tired. The docs aren't sure if this is related to her hemoglobin count. Perplexing and disconcerting. They'll figure this out as we move into Monday. Weekends are always a weird time as the regular docs are all off and the staff doctors come in and try to assess things.

The VAD she is using was making peculiar noises too. SU seemed to think it might have been the compressor and/or the fan. The nurses had to call in a perfusionist. He changed the VAD and took the one she was using away for an overhaul. That is always a neat trick as he literally tries to change the wires on the machine between heart beats.

She was eating a little and enjoyed the food I brought from the blessed Easter basket - the traditional Ukrainian foods.. the special Easter bread I baked - the babka- some turkey kobasa - lower sodium than regular, low fat ham same thing, a cheesecake cupcake, and of course, a few chocolates.

And the nurses once again, treated her. A couple of little gifts from the special nurses.

So keep the thoughts and prayers coming. Rebel is at the top of transplant list. She is frustrated and upset with these down days. And who can blame her.

After this day at the hospital I came home to prepare a semblance of an Easter Dinner for the RebelTweeny... As I am cooking a few things to augment our traditional food, SU is grazing his way through the kitchen in his usual fashion. I knew he wouldn't eat supper with us. It seems that even after knowing that for me, and what should be a lesson for our children about the meaning of Easter in my and their lives, he chose to ignore it. Sure enough, As I had the table ready and RT and I sat down to eat - he said no thank you and stayed in the basement.
Interestingly, RT is starting to wonder about him now too, in spite of his Disneyland Dad ways. She shook her head and said she didn't understand what his *issues* were.

On Saturday the SU took RT and her friend to visit Rebel. SU made some disparaging remark about ordering doughnuts to the friend. "you're getting a doughnut? They're fattening you know... are you sure?" She was more than a little taken aback by it. RT was mortified that her father should say such a thing...and she told me. I suggested she let her dad know that it was rude and that he hurt her friend's feelings. That a polite conversation with her dad rather than a yelling match would be in order so her dad would understand how she and the friend felt when he said what he did.
She took my advice. And of course, as always, she told me at dinner on Sunday, he scoffed and didn't see the problem. She stood her ground though and told him to please be polite and not say negative things to her or her friends. Good for her. He did this often to Rebel, and she hated it. It's the way girls go anorexic and have other issues about their dads. Rebel seems to have patched things up with her dad. We'll see how things progress with the younger one.

Keep our Rebel in your prayers. I think her frustration and fear is growing. Keeping her positively focused through all these setbacks is tough. But this too... shall pass.

It's Easter Week. We now celebrate for 40 days after Easter.

God Bless you all.

Good Friday.

Take a moment .

Rebel is doing much better. She has responded well to the anti biotics and as I alluded on my 13 she was taken off the list for two days but is now back on the donor list as a top priority. The BF was checked for the virus but he came back negative. The best friend is doing the same. Thank you all again for your positive thoughts and prayers. IT does make a difference.

Because this isn't an airborne thing, we have to be vigilant with gloves and masks when it comes to touching anything that the girl touches. It does make her feel yucky she says. The friends are now finally taking the precautions seriously. As is Rebel who was a little bit lax all on her own. Tough way to learn a lesson. Typical Rebel.

The hospital cleaners have to sanitize her bathroom and shower area to ensure they try and wipe down everything there and get rid of whatever little germs they can. She is hungry and is being allowed Kraft Dinner... her blood pressure is on the low side so they don't think a little packaged processed sodium food is going to be a problem. Spiral KD has less sodium than regular! I'll be delivering lunch today then heading to church for Good Friday services.

Good Friday. If you're a Catholic, a Christian or even if you aren't... it 's a good day to think about and meditate upon your own life. Where you are, where you want to be, who you are, who you want to be. Doing this in context of Christian beliefs (or even not) it's a good day since all the stores are closed up tight and nothing else is open really - to take time and think about what's important to you and where your own life and purpose fits into the grand scheme of things. Take a moment or three.

Good health and good meditations and prayers to all.

Thursday Thirteen.

13 things that have been frustrating...

1. She's off the list for two days.
2. Now she's back on the list.
3. Does ANYONE besides me know how to put dishes in the dish washer?
4. Does ANYONE besides me understand that shoes shouldn't be left in the middle of the entrance hall to the house?
5. Do 14 yr old girls EVER learn how to pick up after themselves?
6. DO 55 yr old men EVER learn how to pick up after themselves?
7. Do procurement offices EVER understand that databases and electronic content are never going to be left on a loading dock - like computers, cars, and pens and pencils - to ensure delivery?!?
8. Do the guys who hand out parking tickets at meters EVER get a freakin' day off?!
9. If the door is closed it means... please don't barge in, okay?
10. If I am on the phone - that would be holding the receiver to my ear and talking - it really DOES mean I can't talk to you right now, because I am speaking with someone else.
11. Why can't that guy at the end of the phone who is not a real person, please just let me speak to real person instead? You know the one... "Hello... welcome to Rogers Wireless" I speak in Ukrainian to him just to get out of robot voice hell!
12. What's with people who don't brush the snow off the roofs over their cars. Invariably I'm zipping along at 120K per hour and the guy in front me has a car laden up with the latest. There is the big WOOSH of snow from the roof of his car... smack! on to my windshield.
13. I am too far away from the friends I want to visit and can't share a glass of wine or three in real life! Soon.... I KNOW.... soon!

Infectious Setback.

Rebel does indeed have an infection. Between the staff cardiologist, the IDC doctor (Infectious Diseases Control) the nurses and us it is being put under control. She has had a couple of courses of anti-biotics. Today she'll get some other type of anti-biotic to go through her blood system to ensure her VAD is protected and to get this thing out of her system.

Needless to say her spirits are down. The charge nurse has been rather aggressive in how she expects things to go. We are going to have to get Rebel's room sanitized somehow and all the *stuff* in her room has to be brought home or cleaned thoroughly to get rid of this thing finally.

Everyone is on top of this and it is a setback, but given everything else Rebel has been through she'll get through this too.

Our friend Bill who has had a VAD and a transplant at the beginning of February will be going home out west on Thursday - his birthday. He's been kind enough to chat with Rebel about his experiences and even though she is much younger than him, their experiences, feelings and emotions have been similar. He told me he will pop by before he leaves on Wednesday to have a chat with her. He will have to chat from the door of her room because he is immuno suppressed. But he wants to help her get back into the right frame of mind. Like Rebel, the doctors rejected at least four donors that he knows about to find him a great match. It has clearly made a difference because he is doing really well to be able to be home on his 55th birthday.

Today is a special liturgy at church as part of Holy Week. Liturgy of the Pre Santcified Gifts and the Sacrament of Healing. I hope to be there and deal with all kinds of healing of my own. Rebel can't of course, but I expect that throwing in a few prayers for her during this special liturgy can't hurt.

A Rash of Troubles.

I didn't get to the hospital til nearly 4 PM today and Rebel was complaining that she was itchy. She thought she had a rash... I took a look and she was actually broken out in hives all over her legs, some on her arms neck and face too. Pretty seriously too. HUGE things.

The doctor came in... Resident on duty... and they gave her a shot of Benadryl... intravenously through the pick line. The dose was a hefty one and caused Rebel to get a tad woozy, which she didn't like at all.

None of us could figure out what would cause it. No new foods, cremes or lotions, soaps - nothing new at all. Though sometimes meds can cause the break out.

Her nurse took her temperature and she was border line starting a fever, so there was a concern about infection somewhere... either at the VAD site where it goes into her body or at the pick line They started antibiotics right away to fend off any possible infection. They also had to take blood to check for infections and it had to be on her arm rather than through the pick line which was not pleasant with Rebel’s tricky veins. Took two nurses to get things done there.

At this point she was also shivering uncontrollably. But her VAD and *the numbers* were good... so that wasn't a problem. Getting her to stop shivering took a whack of blankets and me and the BFF trying to hug her and keep her warm.

Between tylenol and anti-biotics, and turning up the temperature in the room, we got her warmed up again, and she was starting to feel better. The Benadryl worked on the hives almost instantaneously as well.

Once I could see Rebel was okay, and the SU arrived to take over after I called him - along with the BFF and the BF, I had to leave to pick RebelTweeny up and head home. By the time SU came home he said Rebel was doing much better and was pretty sleepy. He didn't stay too long. He rarely does. I don't know why... if it's because the BF is there or if he just can't sit still in a chair there.

We've had a phone call from the SU's father. Mom in-law has been living with congestive heart failure for quite a few years now; she's also diabetic and has numerous gastro problems. She is in her mid 80s if not closer to 90. She doesn't do well following her health rules - food pills etc. She's not been doing well lately. Father in-law said something on Saturday about getting mom in-law to the hospital to get her looked after as she wasn't eating and getting very weak. SU hasn't called his father or his sister to get updates. This will be a very tough time for him. He has no faith to fall back on and I am not sure how good of a support he will be when he has to head home. I am waiting for the dreaded phone call from that family. Sister in-law and I do chat however and the nephews are my facebook friends. So I can ask covertly about what's going on. But I can't do more than that for now.

When I called to check in with Rebel 's nurse at the hospital a few minutes ago, she told me Reb was sleeping and she’ll be checking her temperature every hour and giving her tylenol if they see it creeping up again.

Yet another mystery. The nurses say the hives can happen. In the words once again of Rosanne Rosannadanna... "It’s always something!"

The girl needs to catch a break or two.

Thursday Thirteen.

13 Things for St. Patty's Day

Because everyone is Irish on March 17th

1. Lots of shamrocks for luck - and hope and prayer for a heart for Rebel.
2. Artichoke/Asparagus dip.
3. Guinness (in a dip, thanks Rudy! as a cake, (it's coming! or just to drink!) at least a six pack.
4. Find the two Green dresses to wear to work - and decide.
5. Reservations for the lunch meeting... the city is gonna be a zoo.
6. Green eye shadow to wear or not to wear??
7. Bring the fiddle music to work for atmosphere.
8. Buy lottery tickets that day.
9. Green shoes??? why not! go out and buy some.
10. Green blanket for Rebel at the hospital.
11. Corned beef and cabbage for supper?
12. Green food dye for supper's mashed potatoes to gross out the RebelTweeny.
13. The Irish margarita ingredients and call Lily over for a belt after she's done her run.

Wordless Wednesday

How do we get rid of the snow?

Talking on Tuesday

The SU is on March break... Monday - he didn't go visit Rebel. Free all day and couldn't get there? How come? well he slept til noon for starters and I heard... "I was busy." okay... what could be more important than going to visit your daughter when you finally have free time?

He's also going into work today and part time this week anyway. Why? Has to do some of the extra curricular stuff for activities going on post March break. Gee... may be spending quality time with your girls could take priority. Even though RT says she doesn't want to do anything... if you ask her to go to a movie, or out for lunch... she won't say no. whatEvEr.

I have burned through all my leave and then some so I just can't take the time right now. I am on a programme now to bank time for when Rebel has her transplant. I expect to have extra time left over and hope to pay attention to RT then too. We want to take a trip to Australia... so I hope we can pull that off when it's summer over there.

The RT is going to visit her sister - finally - They're going to have a pizza party with RT's best friend. Rebel has been saving up her sodium points to enjoy her first pizza since going in. The two girls - at least from Reb's perspective - are becoming closer. RT has her moments.

My friends all ask... why won't he leave the house? There is the million dollar question.

Why indeed!

Alarming Night

Thursday night I couldn't sleep and was sorta reading and sorta watching Craig Ferguson and the phone ran. It was 1:00 AM. "Hi it's the nurse at the Heart Institute. " I HATE that .. "Rebel is fine, but her VAD started alarming... it's OKAY everything is FINE... but she wants her dad to come and sit with her while they fix everything up. " okay... everything is fine... so the SU went off after one. I told him to call me when he got to Rebel's room and give me the scoop. So of course by now I am too freaked to either read or watch tv, so I came downstairs to the computer where I've been trying for days now to beat level 6 of Diner Dash Flo on the Go

The problem, said SU when he called.. a smaller wire on the VAD was on the fritz. The perfusionist came in and had things fixed in under a minute. He told Rebel she was fine and nothing was wrong with her. As soon as she was re-wired the numbers all went back to normal. SU stayed with Rebel for about an hour, until the BF showed up and stayed the rest of the night. SU was home by 3:00 ish AM; and I was still wide awake. It was probably about 4 before I crashed... still not able to get the mouse moving fast enough or strategically to break level 6.

The next day Rebel told me the rest of her side of the alarm story. When the nurses couldn't figure out why the machine was alarming so much and slowing down the rate, they thought she might be dehydrated - which slows down the flow. So they had her drink about three pints of water and a half bottle of gator-aid. Then she couldn't sleep the rest of the night because what goes in..... The senior nurse has been around since the first VAD was on the floor so she knows the machine really well. She pulled out the hand pump in case the thing failed. That freaked the kid out even more. They also called ICU to see if a perfusionist was on site. The ICU nurse, figured out it was Rebel and came up stairs to see what was going on and hold her hand. They love her! By then things were settled but it freaked Rebel out somewhat. As always all was well handled at the hospital. And SU didn't balk once when the call came. he was slow in moving out... took him almost 10 minutes to get dressed and out the door! We all lost sleep, but Rebel and I both fell asleep in our respective beds on Friday night very early! Surprisingly, it was probably the best night's sleep I've had since Rebel went into the hospital.


And for your enjoyment... today's aftermath of over 50cm of snow. 10cm = 4 inches... so we're digging out! This is looking out my kitchen window from the table... to the front street.
got shovels?

Today

is International Women's Day... so as a North American - Canadian woman, I really shouldn't complain too much. I should celebrate what I do have in spite of the ennuie and even in spite of my very sick child.yes emancipation and equality means, in theory, I might have to share my pension ( rolls eyes) but let's look at the bigger picture for a minute.

I CAN do whatever I choose about the challenges in my relationship. I do NOT have to wait or beg or plead with any tribunal of men or otherwise. There is an objective rule of law here.

I do NOT have to cover my face and entire body in a horrible black coat before I leave my house. I can work and talk to anyone I choose without the permission of any man in my life. I can wear what I like without fear of someone smacking my head with a whip. My girls can get the education they want and become whoever they choose to become. They have health care that costs nothing except the contributions from my tax dollars. For this... we are now truly appreciative.

Today, while we North American women go about our lives, let's not forget that for many of our sisters elsewhere - the poorest of the poor in African countries need food,health care and education; the women saddled by rulers who use religion and oppress and rule by fear and control need to know we are aware of their challenges and are trying to pitch in and support where we can without endangering them. These are the women who need our support and help. Keep them in your thoughts today and find a way to help them. They are the women who truly deserve and need our help.

And remember.. in the words of Helen Reddy - I am woman. Hear me roar (baby!)

Thursday Thirteen

13 things I like to eat!

1. Warm goat cheese salad at D'Arcy McGee's.
2. Perogies (potato cheese) with sour cream.
3. A really great sloppy burger.
4. My home made chicken soup ( my mom's un-recipe)
5. Freshly boiled lobster with clarified butter on newspaper no sides needed except a great lager!
6. Smoked gold eye.
7. Old Dutch potato chips ripple with sour cream & onion dip.
8. Medium rare piece of beef on the barbecue.
9. Iris' home made cassoulet.
10. Snacks - hummus, veggies and dip, smoked salmon on crisps, cheeses and fruit - for soaking up the wine.
11. Christmas time antipasto in a jar ( my home made stuff).
12. New Orleans bread pudding.
13. Smoked herring with sour cream.

not QUITE Wordless

Unshelved
by Bill Barnes and Gene Ambaum
Feb 25 08

for the record - Yes, I have my library card memorized ( because of all the online reserves and renewals I do with my borrowed books!)

and NO!

I don't believe I wear librarian shoes.

Talking on Tuesday

(a new feature on the Spousal Ennuie Blog, perhaps?)

Interesting about the SU. I have figured it out. He doesn't make meals. He cooks food. And then either eats it himself or puts it away. So if I'm not home, and the RT says she's not hungry, he believes her and eats standing over the sink and she eats breakfast cereal instead. I'll walk in the door, tell her I am making a meal, put plates on the table with food on them..l and she sits and eats everything and more!

We had a number of very nice people send meals over to us during the last few months - particularly at the beginning when I was too distraught to do more than open the fridge and look. The SU didn't eat a single meal sent over by friends... except for the night I saw him sitting in front of the tv eating a turkey leg. ( One friend sent over an entire turkey dinner - roast turkey, mashed potatoes, carrots and squash, and gravy) He would eat nothing. Not the Indian curry, not the lasagna (made by a teacher at his school even) not any thing. He preferred to cook his own meat rather than nuke a ready made delicious dinner! There is something psychologically weird there. What is that about? Seriously.

Back at work I am asked a lot of questions about our Rebel, One of my favourite clients, an IT geek of the hard core variety, had this to say after I explained Rebel's ventricular assist device and how she was attached to a computer and drive lines and a suitcase in order to be mobile. "Gads, I hope the thing isn't running on Microsoft!" ACK!

So far I've been told that Rebel's docs have seen four offers of a donor... none of which they have found to be exactly right for my girl. God bless the families and the donors. This has been somewhat reassuring for Rebel as she knows she's "in the system."

This working nearly full time and visiting at the hospital is a bit of a challenge. I've decided to let the work go a little more. I have the okay of the lads who call themselves *managers.*

I really have to watch my Diner's Dash obsession. The little Nintendo DS is giving me RSI... and my keyboard at work is suffering... I arrive at the hospital and demand the NDS and barely speak during my *visit* with Rebel. She rolls her eyes as she surfs the Internet or watches a movie.

Ever Vigilant

Week three of being in isolation because of the hospital MRSA bacteria, and after two weeks of negative swab test we counted on another negative this week. Unfortunately, and pretty depressingly, the third swab came back positive. The nurse took another swab just to make sure and again, it came back positive today. This was so disheartening for Rebel . She is tired of all of us wearing gowns, masks and gloves. The point is.. for us not to carry the bacteria and spread it outside her room. And she gets it and we get it. However it doesn't make it easier to have to keep this exercise going for another three weeks now. It's just another one of those things on the up down up down roller coaster we and Rebel are on I suppose.

There are a few other things - another blood transfusion as Rebel's hemoglobin is low.. but that is not uncommon because of the blood thinners needed to work with the VAD. Until the recent MRSA thing...things are as they should be. It's tough though as Rebel isn't supposed to touch anything when she leaves her room, and we have to be vigilant about what goes in and out of her room.

Work has been all right. I've been visiting at lunch and then toward the late afternoon but it means the SU doesn't get in til late, so if I can somehow get myself to work by 8 AM, I can leave earlier in the afternoon and still head home at a time reasonable for SU.

The SU is beside himself with this MRSA thing. He's convinced it has to do with the Rebel's BF who doesn't always follow the masking rule. The two kiss regularly and the SU is sure it is all his fault. He can be a bit of a dork in spite of his devotion. For a man in his 20s he can be a bit of a boy sometimes. - the BF I mean! The girl's best friend also plays fast and loose with her mask. On this the SU and I agree that we hope these two have figured out the need to follow hospital protocol regardless of what our Rebel likes and doesn't like about the mask and gown treatment.

I have been playing with the daughter's pink Nintendo DS... I am so bad at anything needing hand eye coordination so no golf, no cars... I can manage Diner Dash and Are You Smarter Than a 5th Grader... so far... Mario.

I can't even BEGIN to tell you how bad I am at that...