Bushwhacked!

Thankfully I don't have too much to say about Rebel any longer. Health wise she is doing so well. As for everything else.... well... I am not much in the mood to continue ranting or whining about her behaviour with the BF and what she is thinking on that front. He is truly a jackass without a brain that does much and for some reason she is smitten by him. I have to be patient and hope she figures out that he is not all she thinks he is - not by a long shot.

Rebel Tweeny - soon to be rechristened Rebel Jr or Little Rebel ( should there be a vote?) had her dance recital this weekend. She was great. The theme of the show was The Mall and her section was the Hair Salon and they danced to a song from Hairspray. The first show she was chewing gum. It was so evident. But the dance was great. The SU felt that because he watched her during dress rehearsal he didn't have to attend the real show. Rebel came with me and we cheered the kid on.

Rebel Tweeny has been "cleaning up" her bedroom. She had three garbage bags full of crap in her room. I heard clunking in one of the bags and opened it up to find a whack of CLOTHES in the bag along with real garbage. I was appalled. The kid's idea of cleaning up is just that. Throw it in a garbage bag and put it at the side of the curb. I've finished sorting through the three bags, found more clothes, CDs to full an entire cd rack, socks, and lots of other stuff that had no business being in the garbage. That plus cans and bottles that should be recycled. When she gets home this evening we will have a lesson on cleaning, sorting. To my mind it speaks of a child who has too much and no respect for what she does have. I am not pleased. The problem of course, is that the SU never gets involved on the discipline side of things but is always ready to buy her whatever she wants. This has to change. I've told him no more clothes or other consumables until she starts to respect what she does have. The sad thing is I don't expect any support for my position from the father of my daughter.

So I expect at some point the spousal separation process is going to kick in again. I am still so bushwhacked from the whole heart transplant stuff that to gear up again has me wanting to run for the scotch bottle. So I am just going to quietly work on a few things and start to make plans again and see how things progress through the summer. I am almost at the stage where I will take over rather than letting the SU run the show. I need my life back. If I am the only one of the two of us who has learned from the Rebel's experience that life is short, precarious and precious then I need to really get out there and live. And now. Not later. And to start doing it without the SU and his lack of enthusiasm for anything and everything in spite of what we have been through.

One of the first things I have been mulling over is a road trip to head west to visit the family and friends. I am thinking it could be fun. If someone comes with me - great! If not - I'll go it alone. I expect at this point, it's going to be cheaper than trying to fly AND rent a car when I get home. I am going to think about it a little more before making a final decision.

They will KEEL you!

I have a lovely next door neighbour. A Haitian French speaking very devoutly Catholic woman and her family. Her son, mostly a quiet young man - very creative, doesn't drive or party much from what I have learned. And her daughter - another version of Rebel - took off after college headed to the wilds and rural parts of New Brunswick - took up with a "whiteboy" got pregnant - had a baby and lives far from home out of wedlock. Haitian mama is not happy with her youngest offspring. She is also a nurse and has been keeping tabs as well as saying the Rosary for our Rebel.

A few days ago she came over and we chatted about our kids. By now I had told her how Rebel has been mostly having "sleep overs" at the BF's place - where he lives with his mother and her significant other. We usually speak French together but once I get going I can't rant in French the way I can in English or Ukrainian so we end up in "franglais" mode. And what she said to me about our kids in her heavy Haitian French accented English: - " KEEDS! Marrrrrie - dees keeds. Dey gonna KEEL us! yes dey arrrre! So you what I do Marrrrrie? I say... pray pray pray and den just geeve it a rest. You and me? We don't want dees keeds to keel us. So.. we breathe and we pray and we LEAVE DEM ALONE to do what they want since they don't wanna LEESEN! "

"You HAVE TO look after yourself," Haitian Mama continued, "because deee keeds of ours - they gonna need us ALORS they gonna need us and we have to be strong."

Point well taken. I seem to still be going through some kind of after shock and stress reduction. Based on Haitian Mama's words, I do indeed have to look after myself. It seems I have a breast infection. WTF?!? An abscess similar to what I had when breast feeding oh those 20 years ago! Let me tell you I first felt that little hard mass in the there and I just about jumped out of my skin and thought " no, this can't be happening. NO WAY!" I called my doctor's office first thing this morning and was in there by 10:30 AM. I have the anti biotics and need to drain this thing (not pleasant at all.) She is right on top of it and already I feel better. But indeed... I have to keep taking care of myself. And dang! I have a lunch date and two dinner dates this week and because of anti biotics... have to be off alcohol. If it doesn't KEEL me - it WILL make me stronger. I think I have enough strength now thank you very much!

Another small step.

The physiotherapist had Rebel stand up... twice today. She had jelly legs, but she did it. Her nurse, attacked her hair again, and got all the knots out. The nurses are all feeling better about her hair. She is off an oxygen mask and has those small nose tubes only. Even at that, she is only using a small amount of oxygen. I think she feeling a little anxiety about getting weaned off this.

Rebel had a tough time sleeping yesterday night A little bit of anxiety about breathing and sleeping at the same time. No surprise at all given everything else she has been through. I told her I couldn't sleep much either last night because I figured she'd be worried about sleeping.

her nurse gave Rebel some ativan this afternoon after her work outs so that she would nap. So I told her I would take my drugs tonight so I could sleep too.

My own doctor suggested I have some massage therapy which I did today. It was amazing how all the stress made it's way through my body and out. About half way through the massage I could *feel* things leaving my body and I started to cry. The massage therapist was good, and told me to keep crying until all the stress left my body. Man, I was exhausted by the time I left but I felt a whole lot better. She told me I was holding way too much inside and she had to really work to help me let it go. I was *ordered* to return next week. I have to say...I appreciate the health plan we have as government employees ( thank you union!) and that massage therapy is covered. And indeed I will return next week and enjoy I hope a little more the full treatment.

That plus one of the "church girls" (MY generation can NOT be "church ladies!") brought me lunch at the hospital and we had a good conversation. Also much appreciated.

Prayers are being heard.

Friends are being supportive.

What more could one ask for?

Deep Breaths.

The breathing tube came out this afternoon. This was huge. The respiratory therapist, the physiotherapist, a nurse, a doctor, the transplant coordinator were all in attendance. And Rebel did well.

They kicked the BF and me out of the room as the doctor told us that Rebel needed to focus on her breathing coaches to get her body to remember what to do.

When I came back an hour later, the physiotherapist had her sitting up with an orderly holding her up and her nurse brushing her hair to get the knots out. The physio had her coughing to get the phlegm out of her lungs, and trying to get her to keep her neck up. She has an oxygen mask on to help her. As I left they were very pleased with how she was coping.

Her nurse gave her a taste of icy cold orange juice on a sponge. No liquids yet until they are sure she can swallow and not choke or have anything end up in her lungs. That will be another day or so.

For the rest of the afternoon, the respiratory therapists would come by and smile, the nurses would all come around and give Rebel a big thumbs up, and even a couple of the doctors checked in. Rebel was happy to lie down again.

The swelling in her legs is improving. And she is moving her ankles and knees up the way the physio told her to do for exercise.

We are still waiting for her kidneys to kick in and for her blood to clot properly on its own. For now... little by little... small steps and milestones.

Prayers are miraculous and the Lord hears!

Thank you all!

Cautiously Positive

Rebel seems to be getting some strength back. She has had physiotherapy every day since Friday. The week day therapist is impressed with how well she is managing to do given how long she has been virtually immobile. She does leg and arm raises, neck movements to get her to use her neck muscles and a lot of breathing exercises to get her using her diaphragm. This will help her a lot if the breathing tube is to be removed some time this week. She was exhausted after about 15 minutes of this work.

The sign language isn't getting any better. But her hand writing is getting stronger and easier to read so that helps. In spite of the eye rolling and frustrations.

So as her strength slowly comes back, we're still waiting for her kidney function to kick in and for the blood to clot on its own. The medical team seemed to be cautiously positive on her progress.

Her doctor from the Heart Failure Clinic, and transplant director, came around to see her she told me. He told her she was one strong girl and that she more than likely would have needed the ventricular assist device - but he would have preferred a planned surgery rather than the dramatic fashion she had to get it implanted. She told me she was happy to have him visit her.

I am kind of tired. No surprise. I have a prescription for Lorazapan and haven't taken it yet. Friends at church, doctors, told me to listen to my doc and take it. For two reasons... it will take the edge off and it will also help break negative cycles that disrupt sleep patterns. A good friend said - take the drugs - it will stop your brain from all the "what if's" at night. I think she made more sense than the docs.

I wonder occasionally how the SU is coping. Given all I have going for me - drugs, a massage therapy appointment, friends coming to see me at the hospital, emailing me etc etc, and he doesn't appear to have that much going on. He certainly doesn't tell me or even look to open up. I have enough going on in my head and keeping it together for the RebelTweeny that I figure it's not my job to probe. I am here if he wants to talk, but then again, that would be raising my expectations higher than they have been in months.

So I will continue as I have and focus where I need to instead.

Status Quo.

I walked into Rebel's room and there she was watching tv. The nurses got a tv in there cable and all. We watched Beauty and the Geeks. I'd never watched this before. It looked like we were watching the first episode. SU went to visit when I got back. He said the remote didn't work, so he is going to get a universal remote because it's hard for Rebel to change the channels from bed. It is helping relieve the boredom for her even in her pretty weak state.

She wrote me a note. "when can I go home?" That was a tough one. Broke my heart nearly. But I managed to give her a decent answer I hope. Then it was "They won't even give me water or ice chips." So I asked her, with that breathing tube in your mouth, what do you think? And I got the "talk to the hand " response along with rolling eyes. She knows, but her mouth is quite dry and she finds ice chips help. However with the tubes the docs and nurses are afraid she could aspirate the water or chips and it could be difficult. I see some feistiness! I want her to keep that up! Her nurse today told me that she is a great patient, that she is coping with the tubes very well... better than most people she sees. I told her I was proud of how she was handling things, even if she couldn't get ice chips yet.

All was status quo today. They have decided to take a little more fluid off so that is good. The physiotherapist was in again helping her move her arms and legs. It looks like the chest is healing, and there is less blood seeping through.

On the weekends it's pretty quiet around the CSICU. So we hope it stays this way.

During one of the first snow falls we had - one of those big ones,Rebel and the BF went to the local 7-11 type store called Macs for Blue Slushies. Rebel realized after she got home that she must have somehow dropped her wallet in the snow. There was so much snow that evening that even though the BF went looking for it, it was buried! She had about $60 in there for some Christmas shopping, her gov't health card, and all her ID and cards. It was a beautiful leather wallet that she bought with one of her first paychecks. She was so upset.

Well, the snow has practically disappeared and didn't some very nice woman find the wallet today at the Macs. She called us and SU went and picked it up. Everything was intact. Everything! The SU gave the woman a gift certificate for Second Cup to thank her. Rebel was so happy! The wallet is a bit sodden to say the least, but we're drying it and I'll find some kind of leather conditioner for it so it doesn't go all wonky. She was a happy girl when she heard this news.

Stable Today.

It was a quiet day today in the hospital. I spent the better part of the day there today. When they change dressings or need to clean her or change IVs I get kicked out for part of the day. The BF and I switched off and SU has gone to spend a little time this evening. He surprised me by buying the BF a parking pass for the month. The BF has managed to get a bundle of parking tickets at the hospital. They're ruthless those carpetbagging city meter people... It's just wrong. But... I digress...

According to our Rebel, I suck at sign language. Her very airy fairy hand signals don't get her messages to me. There was a lot of eye rolling on her part.

I brought in some photos for the room, - a few of her best friends and her sister as well as a page that she did in her scrapbook the last time she was in the hospital. That plus a couple of Tinkerbell pictures and I had the room covered. She was happy to have them there.

They have started some physio therapy - aka "training" for her legs, arms as well as her lungs and muscles that support the lungs. This is important to get off the breathing tube if the fluid is coming off her body. It will also start to help her gain back strength and get her prepared for heart transplant and recovery. The docs are still watching for "ooziness" and bleeding around her dressings. Today, they were satisfied. The weekend, we hope and pray will be a quiet and calm one for her.

And our friend Lily is running a half marathon in Phoenix on Sunday. She was told that when you focus on something during a long run it can help you get through when you don't think you can. So as she said earlier she is running for Rebel on Sunday. She will have a picture of Tinkerbell with her and has chosen a bible verse that inspires her.

Isaiah 40:31:
“But those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary;
they will walk and not be faint.”

A good message on which to focus.

Slowly. Slowly.

Rebel had a little more bleeding yesterday. It was described as "ooziness." They had to go into her chest wall again and deal with it. The doctors say it will ease up. But it takes time. Rebel still has some infection because of the surgeries and all the IVs but it is being treated with antibiotics.

They would like to remove her breathing tube to prevent any kind of permanent damage in her air passage. To do that she still has to eliminate fluid that is in her body. They are working on that. Too much fluid could end up in her lungs and that is to be avoided. So many things...

each one depending on something else. If she still needs breathing help they will probably consider a tracheostomy which they say will be far more comfortable than the tube in her mouth and down her throat. That and waiting for her kidneys to come back online. sigh... It is all a fine balance to get stable and improve slowly slowly.

In the meantime,Rebel writes notes. "Blue slushie" - she loves them... "who is out there?" when SU went to pick up some cards left for us by several friends and colleagues at work. The boyfriend is a regular and she manages to write a lot of notes with him and even play a bit of Xs & Os.

The head of the ICU, told us we should now be spending more time with Rebel since she is awake more. I expect I'll be going in late morning and staying most of the afternoon and then SU and or the BF will take over. We'll probably read books to her. One of her nurses suggested we bring some pictures in so I am taking along a couple of pages that she did scrap booking - of her friends and herself. Then there is all the Tinkerbell stuff we can bring in too.

That should help cheer her up too I hope.

Clearly Making A Difference.

My goodness! I walked into Rebel's room today and she was *quite* alert. She was pretty emotional for a bit... The Heart Transplant Coordinator was there too. She visits Rebel every day.

Rebel's first comment to us both was mouthed through her breathing tube... BA-BEE? What? Baby? and she shook her head yes. The ticking of the LVAD was making her think she had a baby on her tummy. We laughed as did the nurse as no one had never heard that one before. So we told her what it was and that she was sort of bionic and we think she accepted that even if it seemed to be freaking her out.

She was far less agitated than yesterday. We told her what day it was... and I think that kind of threw her for a loop. I told her we would celebrate Christmas with her once she was strong enough to open her presents.

Things were more interesting.. as she motioned for paper and pen and wanted to write things down. The first few things didn't make any sense. I couldn't read what she was writing. The nurse lightened up her sedation, and finally I could read what she wrote.. *school* My Rebel was worried about school! I told her that her principal wanted to visit her and she kind of rolled her eyes and shook her head no. I asked her if she wanted to do home work - and she did give me a look at definitely said.. "are you effing kidding me?!"

She seemed to be worried about a few things and I reassured her that there was no need. I told her her dad and I had everything under control. All she had to do was continue to get stronger so the breathing tube could come out, and her body could continue to regain its strength.

SU said that she was writing a lot when he went to see her after work. And even in her writing there was some humour too. No doubt this will tire her out. But it appears that there is some improvement in her strength. Her heart still beats erratically I think... but the nurse told me that as long as the LVAD is there it is keeping time and beating properly for her. I have to trust them. Small steps.

Prayers and positive energy are clearly making a difference,as is time and the amazing work of the dedicated medical people at the Heart Institute.

Calmer Waters

After a pretty rough weekend we are back to calmer waters over night and today.

The Sunday night nurse decided to put Rebel's agitation to rest and sedated her so she wouldn't feel the tubes and relax some. I came in to see her today and she was still pretty sedated. Her heart rate was lower, though it can still spike. So this is good. She is off the blood pressure meds again and that's good. They are adding some drugs to her blood to help it clot... but not too much. Her blood gases are good, and liver function is good. And she is sleeping to keep her agitation level down.

I met with one of her docs who says they want to try and take the breathing tube out some time this week. We will have a meeting with the docs to talk about "the plan" for Rebel for the next while. Again, incremental small steps.

This was a better day today.

I asked SU to talk to the Rebel Tweeny's guidance counsellor so that her teachers know what is going on. When he came home he said he didn't have time, but he did talk to her teachers... so... one visit to the guidance counsellor avoided yet there was time to talk to FOUR different teachers... sigh... as long as they are aware. RT is a little like her dad. She doesn't and hasn't said much. I am watching this. It really can't be easy for her. But I am not pushing her either.

As for SU? I don't know. I don't have the energy to deal with his feelings. And probing is out of the question.

He wants to talk.. I'll talk.

But I think I am coping with enough .

The roller coaster we are on...

I went with the Rebel's BF to visit Saturday. After reporting to the volunteer desk we were told we had to wait because there were doctors having a conference in her room. This is not usually a good thing because it means *something* is going on. Sure enough, Rebel had an infection that was causing her heart rate to go up. This is one of the common things that can happen given all the intravenous sites she has as well as the connection to the LVAD ( left ventricular assist device)

So she was being given doses of antibiotic - they knew what the infection was and how to treat it. And then once again, a 2:30 AM phone call telling us they believed she was bleeding and they had to take her into the operating room to get that under control. The LVAD specialist was called in for that. We got the all clear at around 6-ish this morning. Her heart rate is still a little elevated but it's being monitored. They are experts and know what to do and how to anticipate each hurdle as it comes along. So we take the good days and know that this is something she has to get over.

I went to see Rebel after church this morning, and found her quite agitated. Apparently she was wide enough awake to want to be pulling the tubes out of her mouth and throat. And really, who can blame her. If you know Rebel you probably know what she had to say about being uncomfortable with these things. However, pulling out tubes in a semi stoned- tripping-on-the-clouds state isn't a good thing and her nurse had to restrain her hand. Not an uncommon thing to happen she told me. And we both just kept repeating to her that they were there to help her and she had to let them be for a while longer. Our impatient Rebel heard us. The nurses tell me she won't remember any of these episodes once she is fully conscious again. This is good.

One of our pastors from church came to see her again. I may only be imagining it, but his prayers for her and for the amazingly dedicated medical staff at the Heart Institute seemed to have helped calm her down a bit.

The SU is heading over a little later today for a second visit.

So again, small steps. All positive.

Rebel is holding her own. The docs removed the smaller ventricular device called an Impella and her heart on the right side is managing. She was very responsive today in her stoned state and seemed to hear what I was saying as I blabbed away about nothing. The nurse she had today hadn't seen her since Christmas and said she was very encouraged by her progress. She said you can't see a lot of progress day to day, but from last week, there she could see the difference.

The docs plan to remove an IV that is in her neck vein. This is good. They are planning to try and put a feeding tube into her stomach to stimulate it and see if she is able to digest food. The tube is down her throat into the esophagus to the stomach. They will attempt this procedure on Friday. So again, small steps. All positive.

The nurses do warn us though. It's a roller coaster where Rebel could have a couple of good days and then something will set her back a little. They know what they are talking about. It's the good days that we continue to be thankful for and pray get us through the rougher ones.

A couple of my friends from work brought me lunch and kept me company while I was at the hospital today. It was good to get the latest dirt on stuff going on and yet know that I was removed from it for a time. I have a freezer and two fridges full of food. People want to help and not having to worry about cooking meals as been wonderful.

Small small gains.

SU visited New Year's Day and I took the Rebel's BF with me around supper time yesterday too. The nurse today told me she had a good night the last night and a comfortable day. She was quite responsive under all the sedation. She wriggled a bit - or so it seemed to me when she heard the BF's voice. They are glad to see the responses from her even if she won't remember this down the road.

The bleeding seems to have subsided. The meds were stable today, more fluid is coming off her, and all seemed tranquil. It's a positive way to start the year.

It's still hour by hour, day by day. I think they'd like to see this kind of stability continue.

I can sleep a little easier tonight.

The nurses asked us to bring her hairbrush, which I brought along. They want to keep her hair looking decent. She'll be glad of that. I know for a fact when she wakes up, it's the eyebrows that will make her crazy. She loves her tweaked perfect brows and an extra hair where it doesn't belong well... OY!

The nurses were taking bets as to whether or not the Boyfriend would fall apart seeing Rebel surrounded by all the machines. Apparently it happens. They were pleasantly surprised that he coped all right. They will let him come visit now for short periods when the SU and I are not there. She certainly recognized his voice.

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.