A Fine Balance.

We received one of those 1:30 AM phone calls last night. The nurses discovered that there was some bleeding in Rebel's chest. The cardiac surgeon had to find it and stop it. We were told that this could happen. More than once even. It's not uncommon given the fact that Rebel has to be on blood thinners for the machines she is on. This is something that is almost always anticipated and one of the key things that is being monitored.

So a surgical team came together in the wee hours and did what they had to do. We got the all clear phone call at 4:30 AM. There had been some clotting at the tubes that attach her heart to the ventricular device that needed to be cleaned. The surgeon, another one of these brilliant top flight recognized doctors at the Heart Institute, called us and told us what was done, how he fixed it, and how Rebel was doing.

SU and I saw her today, and were told that it's always a fine balance between using blood thinners and ensuring that bleeding is kept under control.
She was responding when we talked to her. She is still sedated but could hear us and would nod her head if we asked her if she could hear.

I told her that many people were thinking of her and wanting her to keep improving and getting better. I let her know that if she was worrying about any of us, she didn't have to. (because she does) She needed to focus on herself and keep fighting and to think only of how she could help herself. Perhaps in her "stoned state" as one of her nurses put it, she won't remember what I said, but on the other hand, the subconscious mind is still a mystery. I believe that the positive messages we send her is what she needs to hear. She has to believe in herself and as she is "tripping high" in those clouds she will focus on helping herself heal too.

It Takes Time.

SU and I spent a short time with Rebel today. Rebel's BF is supposed to be fixing the brakes on my car today so I asked the SU to take me to see our daughter. He did. Without a sound.
Her kidney function isn't good yet and this is a concern. The nurses are saying it could take time but it should come back to normal at some point.

They are lightening up her sedation and seeing how she responds. She opened her eyes a couple of times while we were there. They would open very wide and then close almost immediately so it's difficult to know how much she focused and whether she even processed that we were there. The nurses say she will hear us if we talk but she won't remember anything when she is finally fully awake.

She also told us that some families take pictures of their patient to show them afterwards. I don't know about this idea. I know that as much as Rebel does like to know everything being done for her and to her, seeing pictures of herself all kind of puffy with fluid, surrounded by machines and lines and breathing tubes doesn't seem like a really good idea. I couldn't be there taking photos.

The night nurses washed her hair and gave her bath. Rebel loves her long locks and I am sure when she awakens she will appreciate this.

The nurses truly are angels. They do amazing work and are so caring. They are truly are the back bone of the medical system. The docs and the machines do much oh yes, but without the nurses.. well... who knows how we'd cope.

Very Small, yet Positive.

The Rebel has been moved out of the operating room and into the recovery area. Her chest and sternum have been sutured closed and she is being monitored in the Surgical Intensive Care Unit near the operating rooms.

The plan is to continue to allow her rest and see how well she stabilizes. The nurses were trying to brush her hair today and she did make a little noise. The nurses say that this is good as her sedation is at a good level.

The doctors plan to remove the second smaller ventricular device on Monday if she continues to stay the course she is on right now. So.. once again, it's small steps forward. Very small, yet positive.

One of her nurses recognized me. She is looking at changing careers and heard me speaking at the local College about being a librarian. So there we are standing over Rebel's bed talking about careers and how to get an MLIS by distance ed. While rather surreal, it's one of those things that Rebel loves - these random meetings of people with less than 6 degrees of separation.

She's turned another corner.

I was at the hospital today to see Rebel and talk with her team. Her lead surgeon told me that she has turned another corner. She is responding well to being weaned off the blood pressure drugs, swelling is going down, and the smaller ventricular device is being used for only 10% of the left ventricle work, so they are thinking of removing it tomorrow and closing up her chest. Small incremental steps.

The nurses are concerned with getting her hair washed. They call it their special project, because they know how girls are about their hair. There is a little bit of a lighter feeling around her. It's still extremely critical, but it seems they are seeing how well she is reacting to all the processes they are putting her through. They hope to be able to lift her out of sedation over the weekend or early into next week depending on how well she progresses over night and on Friday.

Your thoughts and prayers from everywhere are helping, regardless of faith, or following. It's amazing. Between my own Eastern Catholic faith, my Orthodox friends, the Roman Catholic cousins and friends, my Jewish and Sikh friends, my born again Baptist uncle and his family, all the Protestant prayer chains of friends who are pastors and friends of pastors, as well as those who use positive energy flows and whatever else seems to work, we are truly "storming heaven" as Blondie said. And from all corners of North America. I am, as is Rebel, so blessed. The positive energy is getting through. It really does make a difference to have faith and believe.

Her team of medical experts are truly the best. Keep them all in your thoughts as well.

Small Gains.

My Rebel is stable. The swelling that is keeping the doctors from closing her chest is going down. It is getting better. She is comfortable and quiet. This is a slow incremental process and she is making small gains. Her doctor is hoping to be able to close her chest in the next 12 to 24 hour period.

SU went to see her today after dropping off the RT at the Boxing Day sales at the Mall. The nurse coordinator who was with me yesterday told him today that she can see improvement from yesterday to today. The prayers and positive energy are loud and constant and for that I am ever so grateful and thankful.

I have a bit of a cold and am being careful about going to see her. I expect today I will stay home and eat a ton of echinecea and chicken soup.

We had a quiet Christmas dinner. RT had her best friend over. This is a child whose mother is whacko - an alcoholic we're sure, and a father who is dealing with this by never being at home. He claimed to be working yesterday. Rather than make a Christmas for their daughter they decided to forgo the holiday. No presents under the tree, no dinner. Nothing. I felt for the kid even though she's been known to make me roll my eyes. On my way home from church I stopped at the one drug store chain that was open and managed to find a bunch of treats to wrap up and throw into a larger bag for this girl. RT was so thrilled. It was the first time I heard a thank you out of her in a long time. Friend was equally surprised.

Her parents should be ashamed of themselves and their behaviour.

Hour by Hour Vigil

Today... more procedures. Rebel had a ventricular assist device put in to take the pressure off her heart and pump her blood. The thoratec device I mentioned yesterday. When they were done they could see that the other ventricle was not working as well so they added another device to help with that. She is the first person in Eastern Canada to have this new device. They had an army of people around her. There were back ups for the back ups.

Because her body has been through so much stress and these devices are having to get her stabilized Rebel has to be taken off the transplant list temporarily. As soon as her body has a rest and is stabilized she will be back on the list either stage 3.5 or stage 4. She is heavily sedated and not aware of anything at this point.

Her blood is quite thin so there is some concern with bleeding. This is common with this kind of procedure. She is recovering in the operating room and tomorrow if all goes well she'll be moved back to recovery. They are starting to wean her off many of the drugs and meds she is on for blood pressure and a raft of other issues.

One of the med team, the Chief Perfusionist, had to drive in from the country this morning and was stuck in a major traffic jam on the highway - not moving at all! She called the provincial highway police and asked for an urgent police escort to get out of the jam and to the hospital. She said it was the first time she had ever had to do this in her 26 year career.

Rebel is going to love these stories. All the attention. Something our princess does enjoy!

And thank you again, everyone for your prayers, your notes It is all appreciated.

We hope you all have a healthy and Merry Christmas.

Slowly ,Slowly. Step by Step.

That's how this is all working. This morning the team lead doctor told me they woke Rebel out of her medical coma to test her neurological functions. He said it was quite emotional for everyone on the team. She did everything they needed her to do - wiggle her toes, tightened her grip, and being Rebel - she tried to talk. They wouldn't let her do this and if you know Rebel, I am sure you know she was pissed as all get out about that. They were very pleased with her response. They told her where she was and what they were doing to help her and that they had to put her back to sleep. This was reassuring.

She had a couple of procedures. They added a shunt in her leg vein to help drain fluid. Her veins are so small they had to get what they needed from the CHEO - the children's hospital. They have also added a machine to help with kidney function and dialysis.

So so far all is okay. Overnight they are going to watch her liver functions. It's the liver that helps with blood clotting and that is important for Monday's procedure... the addition of a ventricular device to help her heart pump. http://www.thoratec.com . There is concern with infection, blood clotting and loss of blood, so they anticipate all these things during the procedure.

The assistant pastor from my church visited Rebel and offered the sacrament of the healing (also known as sacrament for the sick) She has been mentioned on three blogs that I follow and know of.

I am overwhelmed with all the phone calls, prayers and good thoughts being sent Rebel's way. It's so much appreciated and it's the best thing and most important thing that we can do for her now.

Further.

I just had an update from the hospital.

She was stable over night. They have to run a bunch of processes today. Have to remove a balloon shunt in her leg, they are a bit concerned with her kidney function and will be on top of that. She coughed and moved a little - so they are wondering about her sedation levels. ( that movie, Awake, came out at the WRONG time, for my liking... oy!) Her meds were all stable and that's good.

They are mildly cautiously positive.

We will go see her later today. But they won't be taking her out of sedation too too much.

Thank you for your prayers. Please continue to pray.

Update:

Sometime after midnight of the day Rebel had her teeth removed her defibrillator shocked her. It shocked the Rebel too. When it happened a second time, I called the paramedics. Her heart was beating so erratically that she was getting a shock far too often.

Thank goodness a senior paramedic was in our neighbourhood and arrived before the ambulance. He got her vitals and started some an ecg and managed to get some sedation and other drugs into her to calm her heart.

We were in the hospital about an hour later. These guys were wonderful. In the hospital after the drugs wore off Rebel had more shocks. This time though she was hooked up to heart monitors and could see for herself how fast her heart was beating. It was almost worse anticipating the shocks than getting them. And there was nothing I could do. The emergency team and cardiologists finally got the arrhythmias settled through drugs and she was moved to the Heart Institute. It was at the Heart Institute they told us that the electro-radio-physicians had analysed her defibrillator and had counted 37

By this time it was nearly 11 AM and I was exhausted. The SU had to stay with RT who had heard all the noise and was scared but didn't want to leave her room. She had a friend sleeping over so that probably helped her. I needed to come home and get some sleep. Rebel's BF took me home.

While I was home however, her condition didn't improve. Her blood pressure had dropped quite dramatically, her breathing became laboured and she crashed. Code Blue, something right from tv. SU said the med teams RAN and did what they needed to save her. I was called and had a friend drive me back to the hospital. Rebel was being put on all kinds of machines to take over her organ functions because her heart.... just couldn't do it any longer. The doctor who led the team getting her on all the equipment came to see us immediately after and told us she was responding well to the changes and the processes. They have to check her neurological functions and will do that as they bring her out of the heavy sedation sometime on Sunday. She is now at the top of the transplant list. She is on the machines that are used for transplant and would be ready if a suitable donor was found.

Rebel is under fantastic care with an educated, caring team of health professionals. I've never seen so many machines and lines of equipment around one person. I had to smile because they have her covered in a special blanket - it was pink! her favourite colour!

The team lead doctor told us that Rebel has been discussed often in their heart failure and transplant meetings. He said as soon as heard he had an urgent need to be at the hospital for a 19 yr old heart failure emergency he knew it was her. He said the entire team is pulling for her- they want her to do well and they will do EVERYTHING within their power to get her there.

With that kind of commitment, and your prayers and good thoughts,

it's all I can ask.

Pray For Our Rebel-Girl

{From Marie approx. 1215 PM Pacific Time}
She was admitted to the hospital. Defibrillated over 37 times in the middle of the night. She is having trouble breathing and they have to take her into surgery. I am terrified.
Please pray.

{I will update when I hear more. ~ blondie}

Pray. Just pray.

Update.

Rebel has managed to get through this one. All went well, but she is swollen and in some pain. Defibrillator turned back on. Percocet for the pain and lots of ice cream to dull any left over pain. Thanks to my personal "trinity" of friends. This is done. Reb figures she'll be able to keep her nail appointment tomorrow! lol Tonight though she is crashed. I am now having a glass of pinot grigio after spending the day.... shopping!

In other news SU was going to go off and buy the girls' gifts without discussing it with me. I see we have fallen somewhat into the trap of having the the girls pass on conversations rather than talking to each other. I finally had to go to "the lair" and let SU know that gifts have been purchased he need do nothing (as he has always done til he decided he needed to be Disney Dad) and I would let him know how much his share will be - he can pay me back.

Rebel wants to have Christmas Day dinner with the BF and his mother and step dad. I am not thrilled about this, but figure I can't be a martyr or lay guilt so I have to let her go. It's gonna be me, the SU and Rebel Tweeny at the table this year. Could be interesting. I think I'll make a Christmas brunch so we have a meal together of some sort. I know a couple of young friends who are not going home on Christmas and may see if they'd like to join us. They know our situation and may not want to walk into that on Christmas Day and who could blame them. But it could be a nice quiet day too. The positive is Rebel wants to go out to have a great day, and I have to give her that.

Par For the Course.

Rebel has to have two wisdom teeth taken out today. One is impacted and the other is hurting and pushing her teeth . There is a bit of infection too which isn't good at all. Infection from the teeth has been known to go straight to the heart. So the oral surgeon the cardiologist and the anesthetist all got together and decided that yes... the teeth had to go. I've spent most of this week with dentists and doctors at various appointments with the Rebel. She has to have this done in the hospital. Her defibrillator is turned off in case they have to shock her externally. ( yeah... I needed to know this) It will be a local anesthesia rather than something that knocks her out. She isn't happy about it but it is less risky.

There really isn't a lot of room to wait for her in the day surgery area so they send me home. Great! I am not happy about this, but hanging around a bad waiting room isn't all appealing either. The docs are all pretty confident and our regular dentist says this should be very straight forward. I am praying on that and counting on it!

And where is the SU? As far as I know, he didn't say a thing to his daughter.

He just left this morning.

Without a word.


Par for the course.

Thursday Thirteen

Not quite a 13. Let's review!
{Post the first line of your first journal entry of each month of 2007.}

Not sure what this says about my life but I have blogged, you have read and we have some thing here about me and my life. I am moving forward. There will be more about that in a future entry.

1. January: I was outside today without a hat, without mitts and without boots. ( today I say... what a difference a year makes!)
2. February: The spouse was preparing for some lunch potluck thing at his work.
3. March: As I pull together all the financial crap for the separation to come, (and more about that in the T13 on Thursday!) I keep reviewing the money I spend to go to the gym. ( and still pulling together!)
4. April: Again! It happened. The hard drive on the latest new computer has crashed and burned.
5. May: This was my horoscope today:Events that would halt another person in his tracks simply whet your appetite for more. What gives? Are you some kind of superhero or something? Other people are in awe of your abilities, as well they should be.
6. June: I don't know about you.... but whatta week!
7. July: While the rest of the world says "Huh?" we in Canada have much we can call our own.
8. August: I wonder if My camera is going to cost a fortune to repair?
9. September: I really don't know if the SU is as clued out as he makes out or what his problem is, but a regular, engaged, on-top-of- it father he isn't.
10. October: A pretty quiet weekend this weekend.
11. November: She must have the flexibility of a pole dancer.
12. December: On Saturday Rebel and I had to get our nails filled.

Gotta Love a Good Barracuda!

In the category of wearing my "big girl panties" Here's the response my barracuda sent the SU in reply to the letter I received earlier this week.( See Tuesday Trouble) Gotta love a good barracuda!

I acknowledge receipt of your letter dated the 14th December, 2008.
My client is frankly baffled by its contents. She advises that she has not been contacted by your client at all to arrange a time to meet with the mediator. She has certainly not refused to attend and she does not believe it makes economic sense to have the lawyers present during the mediation.
My client remains willing to attend mediation. Your client should contact the mediator and obtain some available dates and then speak to my client.
Regards,
THE BARRACUDA!

GOT IT?

This girl feels pretty good in her big girl panties!

Tuesday Trouble!

Why is it that I always see the email from my lawyer's office when I am about to go do something fun, and instead I stress about the NEXT thing the SU wants out of my life. This was a dandy. Apparently, I have refused to meet with the mediator. The SU's lawyer has suggested a love fest of his lawyer, my barracuda, the mediator the SU and me - all in a room together! WTF?!?! Yeah... let's pay THREE lawyers for their time on this separation.

AS IF!

I sent back the Barracuda a note and told her, no,I have not refused any meetings. There have been no meetings to refuse. I have not been asked to attend any mediation sessions and really, is the week before Christmas the time to be doing this? I told her to tell the SU's lawyer that they are BOTH delusional and their fantasy meetings really are not going to get very far. If they want me at meetings, they have to plan them and invite me to attend.

This is SU's idea. His separation, his divorce. He wants meetings with lawyers and mediators, he can plan them. if it suits me, I'll be there. If it doesn't he can keep asking me til I find a time that works. I am no longer 'the wife." I don't have to organize him, plan him, or make his phone alls. It's all up to him now.

We can see how well it's working for him already.

THREE Lawyers, count 'em!

THREE in a room.

I roll my eyes and wonder where in God's name this man left his intelligence!

Leave me the hell alone you fucking fucktard. ( I LOVE that word and have shared it with many. Thank the girl, Blondie!)

A week before Christmas and he is wondering why there are no mediation sessions scheduled.

I gotta go make shortbread.

Thursday Thirteen

1. If you don't want to follow the rules (tell me where you are going please, tell me what time you'll be home, and tell me who you're with) you don't get to use the computer. I end up suffering too because I have to hide the mouse from EVERYbody! sigh

2. Please sign your donor card. Please make sure your family knows your wishes and doesn't over ride you when you are not around. sigh

3. There are no religious objections by ANY faith to organ donation. In fact it is seen by ALMOST ALL faiths as a highest order of giving a gift. The gift of life. Please see no. 2.

4. I am signing the few Christmas cards I am sending from Marie, Rebel and RebelTweeny. SU wanted a separation. He is getting the full force meaning this year.

5. I am sending a "congratulations on your engagement" flower arrangement to the SU's party friend who is hosting a Sexy Santa engagement party. The card will say, "sorry I can't attend but the three of us wish you both many years of happiness as you take the plunge." See no. 4

6. I told Rebel to ask her dad for money to buy me the Christmas present I want and to make it from both herself and her sister. She thinks this is a good idea because... see no. 7

7. I bought the SU's gift from the girls. grudgingly but for the right reasons. He'd damn well better use it!

8. Rebel lost her wallet It had $70 in it, her Health card, student card, bus tickets, hospital card, heart pace maker card and a bunch of photos she loved. She loved her wallet too. "My first grown up wallet, I love that wallet." The kid can't get a break.

9. Rebel's BF has nearly completed his Christmas house lights masterpiece. My goodness we've NEVER had lights like this. Two story extravaganza!

10. We have had more snow this year already than we had all last winter.

11. I am going to the Metropolitan Opera on Saturday afternoon via satellite at the local movie theatre. Romeo and Juliet!

12. It's nuts & bolts and anti pasto making weekend! Low sodium versions. That should be fun!

13. I just want us all to be healthy, really healthy and happy. Nothing else really matters does it?

Monday Musing.

My dad sent me some money. He sold his house and has sent me and the siblings each a nice little sum of money. The first cheque I received he wrote my first name and the SU's last name. Here's the thing... I NEVER changed my name when I got married. I've ALWAYS used my own name. ALWAYS. So WHY after 24 years did my dad address a cheque to me with a name I don't use and now I can't cash the cheque! So he sent me a second cheque and double barreled the last name. I am worried. I think my dad is starting to get dementia of some kind. I STILL can't cash the cheque because I have NO ID with that name on it. He is freaking me out.

SU is annoyed because I bought a new microwave oven. We needed a new one because the current one - 24 years old can't be used when Rebel is in the room. It's ancient technology that could affect her pacemaker. Just as well. It was time for something new. I bought a beaut! A microwave convection oven that is all the rage. It's most certainly not your Wal-Mart $60 cheapy! When I told SU I bought it, all he wanted to know was *how much?* I told him and he had a fit. "With what money?" he asked.
"Not your concern any longer is it? We are separated as per your decision, so the oven belongs to *me* How I pay for it - my concern not yours!" But gee feel free to pay me back half since it is for the family!

AS IF!

Why is he so constantly surprised when I do these things?

We celebrated the Feast of St Nicholas at church yesterday. A great time was had by all. RebetlTweeny received a Clapper for her bedroom lamp and was thrilled! Rebel got a Vin Diesel DVD bundle. Made her happy. She's been working part time and is quite happy about that too. She earned $15 in tips her first two days. She works for Tim Horton's, a little one in a gas station, so she spends her time at the drive through window taking orders and bossing the junior staff around. She loves it!

The local newspaper has started a 6 part series on heart patients waiting for transplants. OY! It's depressing and a little scary, so I am not going out of my way to let Rebel read it. Too many people need hearts. Too many people don't sign their organ cards, and too many people's families overturn organ card promises. This is probably going to take longer than we thought.

BUT..we will remain positive.

Thursday Thirteen {or is it Friday}

13 Things for Friday which isn't a 13th

1. Drive Rebel to school.
2. Meet with the Handy Man Hotline guy. Hope he's a hot handyman. Did I say that out loud?!?
3. Meet with a window guy about the windows. See hope in #2 Though he already loses marks when he complained about coming over on a Friday
4. Pick up the two MP3s from Best Buy.
5. Pick up Rebel from school.
6. Send more photos to COSTCO LAB for scrap booking session.
7. Finish letters for conference in January.
8. Menu plan for next week.
9. Return the overdue library books and DVDs.
10. Pick up some of that Smirnoff Mojito mix for the girls evening during Christmas Lily... you listening?
11. Pick up some of that Smirnoff Cosmopolitan mix for girls evening. Lily see no 10.
12. Drop off deposit to scrap booking consultant for Scrap and Spa weekend in February.
13. Go downtown and get the damn fur coat out of storage before freezing to death!

Wordless Wednesday

Master Plan = Very Busy!

On Saturday Rebel and I had to get our nails filled. RebelTweey needed a ride to another part of our little city to visit a friend. I couldn't take her, so I asked the SU who had just gotten himself out of bed... at 2 PM in the afternoon to take her.

Rebel and I returned and I asked the SU,

"what time did you tell RT to be home?"
"I didn't,"
"Well what time are you picking her up?" I asked.
"We didn't discuss this."
sigh...
"you know SU, she is only 14 and needs boundaries around her. It's fine for her to go out, but she needs to know there are expectations. There should have been a pick up time arranged. "

So didn't he just work himself into a huff, going on about how I was right and YES he should have done EXACTLY what I said, implying that I was yet again, being a nag, a bitch, a whatever negative label he could attach to me.

I told him that as a father his role was to create expectations and develop a sense of responsibility and NOT expect her to come to decisions about curfews etc without parental aid.
All I got was a lot of huffing and puffing. He didn't see my side of it at all. But he wouldn't, would he?

In the end, RT called MUCH earlier than expected and asked to be picked up. SU made a big to do about this as if to say ha ha gotacha. whatEvEr!

The Rebel and her BF were out at his family Christmas part on Saturday night. They stayed out at a hotel. Okay... I don't like this, but she is and adult and I have to deal with it. They got to our place on Sunday and were relaxing - lack of sleep kicking in no doubt, when SU pretty much demanded the BF help him with something. Not a lot of politeness. Yet again, I give the lad credit for how he behaved. Rebel on the other hand was ready to pop his lights.

Two minutes later I spilled bloody red borscht all over my basement carpet stairs. I was carrying way too much to the basement fridge. What a mess. As I was standing over it, trying to figure out what would be the best thing to get red stuff off an ugly gold carpet, the BF comes around and tells me part of his dad's business includes an industrial carpet cleaning machine. He went picked it up cleaned the carpet thoroughly and then took the thing back. This, AFTER he ran errand the SU's requested errand. The lad got extras for dinner that night!

RT on the other hand refuses to pay much attention to me at all these days. Unless she needs my credit card to buy clothes online. Or make up... or tampons. I was fed up yesterday and once again, her dad... did nothing. After having a lovely day - that included NOT going to church... she went ice skating with friends, took a walk after supper hour in -10 weather to the drug store, had her friend stay with her for another hour and then at bedtime decided it was time to do homework. I was not impressed and suggested that perhaps her time management skills needed a bit of improving. SU right there. Says NO-THING! She told me to leave her alone. I decided that Monday she could make her own school lunch and get herself out of bed on her own.

Monday morning, of course, she slept in and didn't have time to make lunch. sigh...

Took SU three hours or so to tidy up the slovenly room he calls home on Sunday. OY! I don't know how many weeks worth of papers and crap was in there. The vacuum cleaner must have been on for at least an hour. And we're talking small bedroom in the house!

I have my master plan kicking into action this week.

I am going to be very busy!