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?

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...

Positive Changes

I enjoyed my girls weekend scrap booking my little heart out. There were 11 of us working away. I even have a video but I've been warned not to post it. It was a lot of fun but I have to admit that looking at pictures of Rebel and my mom from years past kind of had me a tad weepy for a bit. However, the girls kept me laughing, the food kept me in my elastic waisted faux lulu lemon knock offs and the need to crop heads off certain photos kept me going. There was a snow mobile party there as well. So if you weren't cropping heads off photos you were on a snow mobile trail. The local Tims really could have used a drive through window especially for the ski-doo-ers.

I called Rebel on the Saturday to chat for a bit and was told not to hover so much. AS IF! I've written about the *hovering problem * before. Once a mother... and all that! Reb continues to gain strength. One of the nurses from the ward was away for a week; she came back and noticed a difference in how Rebel looked and felt. All good. And we continue to wait and hope for positive changes.

SU found *no salt* that would be ZERO {0} sodium -

potato chips!

THANK YOU Miss Vicki's!

This along with wafer cake, was the treat of the week. The dietitians continue to try and provide a good room service.. it's a challenge so we supplement with mom's take out!

A few more visitors have cheered Reb up and their visits were surprises for her so that made a difference too.

Working has been good and the managers are flexible and letting me work when I need and leave to go to the hospital when I need to as well.

Calming and Coping.

Between things with Rebel calming down and me going back to work, I haven't blogged and apparently it's noticed!

The past week has been one of adjusting medications and ensuring Rebel continues to gain strength. She is sure she takes about 8 or 9 pills in the morning and then several more through the course of the day. Everything from heart pills, anti arrhythmia pills,blood pressure meds, vitamins and laxatives... all make up the cornucopia of pharmaceuticals that are helping her. And getting the balance right is the key. All in order to keep Rebel's heart stable and to build up strength.

The Heart Transplant Coordinator, and her doctor continue to see her each and every day; some of the nurses from the SCICU make a point of visiting when they can catch a moment too. Then there are the *hot* orderlies and even a couple of the cleaning staff pop by for visits. This is reassuring for me as I being back at work means I am not spending as much time at the hospital either.

The diet tech came by and interviewed Rebel about meals for this week. They are working really hard to try and ensure she has food that she likes and will eat. It's not working out too badly. She is actually eating most of the meals they've been bringing her this week and that is good. We do keep bringing her some outside food though because variety is still necessary and really - as much as they are trying... it ain't room service at the Westin! It's still pretty institutional.

I debated whether or not to go away for the annual Scrap & Spa weekend, but I will only miss our Saturday visit and I am just an hour out of town. A little R&R at this point seems to be indicated. Rebel has given me the OKAY to take off. So off I will go and therefore I don't expect to blog again until Sunday. The SU doesn't have much to say on the subject. Rebel gets frustrated when he visits - she finds he talks too much. He also doesn't treat the BF very well and this ticks off our girl. We've chatted about it and I have the honour of having to tell SU to straighten out his act. A story for another blog post though. In the meantime, I've suggested he spend at least a few hours on Saturday afternoon with her. That is if he can get himself out of bed before 1 PM - his norm for Saturdays.

Did I mention I've lost my cell phone? One minute it was in the pocket of coat when I turned it off going into the hospital, and the next... disappeared! sigh... To "take advantage of the lost/stolen programme" or *upgrade* my phone will set me back a mere $100! sigh... I know I have at least one old phone around here somewhere. In the meantime, I'll be using Rebel's phone this weekend since she can't have it in the hospital anyway.

We're coping though and continuing to be thankful for prayers and good thoughts and energy. It does make a difference and gives the rest of us strength too.

Coming to Terms

The last few days have been a better. Meals are still kind of hit and miss. But lately there have been edible lunches and manageable suppers.
The BF brought in a box of *nutritional* Fruit Loops for days when All Bran doesn't hit the mark. And over the weekend I made Spiral Kraft Dinner (less sodium the traditional KD) to make up for some particularly nasty lunch.

The weepiness is still evident but Rebel is coming to terms with her status. Yesterday she did two laps around the ward- 240 metres in total. Both patients (the old boys and a few women) and nurses had smiles as she did the tour. She is surprised when nurses she doesn't know have an encouraging word for her. "I don't even know her," she'll say. She is still overwhelmed that they know her and and about her - even before she came up on the ward.

The docs hope to get her off the intravenous blood thinner some time this week, as "the numbers" are where they need to be. She had to have more blood, to keep her hemoglobin at the right levels, and are pretty confident that she shouldn't need too much more of that, and not too worry if she does.

I managed to get dial up Internet - Thanks much Rudy - so Rebel has been happily catching up on Facebook with her friends. it's slow... but not that bad. As long as she doesn't try watching YouTube or other videos the dial up should be okay.

The charge nurse on this ward has Rebel into Full Blown REBEL-spitfire mode. She really started off on the wrong foot with her and the girl is cutting her no slack. (That's my Rebel!) It's going to be interesting to see how things fare with her. She is pretty much the opposite of what Rebel came to know about charge nurses down on the SCICU. The nurses on the ward seem to be backing my girl on this one.

Rebel and I have been talking a lot. She discusses her dad a fair bit. It shouldn't, but it continues to amaze me that it appears that all this stuff hasn't made the SU think differently about his family. If it does, I don't see evidence of it.

The RT continues to be difficult - probably more her age than anything, and the SU continues to try and use BOTH girls as his pipeline to me. I have had a couple of conversations - or tried - about RT and her lack of contribution at home and the SU keeps turning it back to himself or to other things. It is quite trying.

I've asked him more than once to please NOT communicate things to Rebel that he wants from me, but to attempt something unique - like speaking with me directly and leaving the girl out of things. He looked at me as if I had three heads. I just shake my head. All I could do was tell Rebel that if her dad asks her to tell me something, she needs to tell him to talk to me himself. Her heart doesn't need to be dealing with her father's communications issues.

Isolation isn't Fun!

It's been a bit of a roller coaster since Rebel moved onto the busy ward. It was a dramatic change. Their is a hustle-bustle we didn't have down on the SCICU levels. The nurses have more than one patient and Rebel has to wait a bit for someone to answer her call bell. Her room, a private one, is across from the nurses station so there is a bit of a buzz.

While she is getting evidently stronger, there are little things that are hampering things a bit. The hospital tests for bacteria when patients change areas and immediately when they are admitted. The test is for the MSRA bacteria which they try to control . It's a staph infection- well... Rebel tested positive for the bacteria. And the big deal is she is isolated in her room, and anyone coming in has to wear a gown , gloves and mask. This didn't help morale much.
Doing physio in her room instead of being able to walk around has cramped things a bit. The isolation isn't fun.

Her hemoglobin count has been down so she's been given a unit of blood and that should perk her up. That and the realization of all that has been going on has been overwhelming creating some emotional moments. She's been some what depressed. The charge nurse on this new floor has decided Rebel should consider taking anti depressants. She barely knows our girl but decided that all the crying wasn't good. sigh... Rebel pretty much told her to stick it, she wasn't interested in anti depressants, she was just sad, overwhelmed and wondering why all this happened to her. The shrinks are coming in today anyway, and that just freaked her out a little more. No doubt she'll let them know what they need to know and whether or not they insist on drugs, which we hope they don't. Processing everything this Rebel has been through has to include emotional crying time and we hope this is recognized. This new charge nurse really believes she is "in charge" The nurses on the floor have let us know through their eye rolling that even they have a tough time with her. Her style is aggressive to say the least and I expect Rebel to let her have it at some point.

Also with the change in rooms she lost her high speed Internet access because the infrastructure isn't the same on this new floor. We were told there is no other way to get access via the hospital except on their mobile computers which have blocked Facebook . The IT guy suggested we get Rebel a temporary dial up account so I'll be checking that out for her. No doubt each page will take an hour to load... and it will test her patience but time is what she has in the hospital room for now.

The Straight From the Heart fund raiser is looking amazing. The music includes mostly acoustic sounds with two great bands. I was a tad worried it was going to be really loud head banging music but I've been told that's not what these guys play. Most of the bands members seem to know Rebel as well ( what else is knew) and were really keen to participate in this event.

Her Own Room.

Rebel was moved out of the Surgical Cardiac ICU to a ward room. It was a little tough for all of us. Separation anxiety for sure.

We have all become used to the special one on one care provided by the caring and compassionate nurses there and this was a huge step for her as she progresses.

But it is a positive step. She has her own room. Not quite as nice as the ICU room but she is on her own.
I expect that the physiotherapists are going to kick start her programme now and work with her for more independence and strength - the better for post transplant recovery.

We will also be getting training on her device. One of the perfusionists (the experts on the heart and lung machines who understand blood flow, oxygen and breathing) was with her yesterday explaining a bit about how it works. He did a great job and helped make Rebel feel a little less anxious about leaving the ICU. He along with her first nurse on the ward were reassuring her that the nurses on the ward were as competent as her special angels in ICU.

I am starting to feel as if I should be re-entering the real world and getting to work again. It's been a huge relief to not have to worry about that, but it's time to get back at it and bank time for when I need to be off again when Rebel has her transplant.

And that is what we wait for now.

Officially!

Rebel was officially re-listed on the heart transplant list on Friday. I believe the committee has her at Stage 3. Her doctors want her to continue getting stronger which will help her after recovery from a transplant.

As physio therapy continues Rebel is walking more, sitting up longer and doing her part to get where she needs to be.

Eating hospital food is an ongoing challenge, (we can tell she is getting better - she's complaining more!) but Rebel is mostly forcing herself to eat the stuff put in front of her for the same reasons. She knows she has to get strong and eating properly plays a big role, whether or not she enjoys the tastes and flavours or lack there of.

I met the Hospital's Foundation Director. She wanted to know a little bit about Rebel for the Youth Centre fund raiser and for the telethon. She plans on attending the to thank people and to let them know a little bit about the Heart Institute. When we were done I mentioned how Rebel was disappointed that she couldn't get the Internet even though there seemed to be port access. Well this woman's office is across the hall from the VP of IT. Rebel had access that afternoon. Because this ICU section is brand new all the Internet and cable access is built right into the infrastructure. They let her have access!

When she leaves SCICU she'll be back to a "regular" type room with less access so she's enjoying getting caught up and chatting for the short period left in SCICU.

The SU came to visit Rebel one evening before I had left and before even saying "Hello daughter how are you doing today" managed a succession of negative complaints and whines either about me, or the Girl's boyfriend. sigh... It wasn't very nice. I shake my head. It's exactly the kind of behaviour we are NOT wanting to get her engaged in. I pretty much ignored his whines, or tried to disengage him and continued talking about whatever it was we were chatting about . I also waited some time before deciding to take my leave.

I mentioned to SU when he got home that his behaviour upon arrival at the hospital needed some work, and to please think before whining about trivial matters and if he needed to air them, to please not do it in hospital. He, for a change, had nothing much to say. On the other hand he and Rebel have had some pretty intense conversations of their own about how she landed in the hospital. They are managing to create some kind of relationship which is good.

Mobility.

Rebel got her portable LVAD on Tuesday. This means that she has more ability to be mobile. The nurses got her up yesterday and she took two laps around the nurses stations twice! The profusionist is talking about showing her how to take a shower with her device and getting off the floor to take a tour around the hospital. Rebel might go up to visit the nurses on the 5th floor, or she might go down to the main floor to sniff some fresh air. Rebel is still overwhelmed by this.


It is likely Rebel will be back on the transplant list either this week or next. And they are also starting to talk about a move out of SCICU to the ward. As one of the charge nurse told her, the SCICU is like a cocoon where patients are sheltered and looked after and allowed to take their time to get better. And I think as much as Rebel is feeling tentative about leaving the SCICU the nurses all have a special attachment to her as well. Leaving is a good step, but after the last 6 weeks in a quiet, helping atmosphere a regular ward will be a big step. They told her she won't leave though til everyone thinks she is ready and able. And she is getting there.

This is the laptop like suitcase that runs the device the ventricular assist device that is attached to Rebel to allow her to be mobile, made by Thoratec.

Progess Positive.

After a Christmas filled weekend Monday rolled around and everything continues to progress positively.

Rebel had a visit from her boyfriend's family on Sunday. They also brought her gifts for Christmas. It all made her happy.

Yesterday the decision was made to remove the lines used for dialysis. Her kidney function has returned enough over the last few days, and she only needed dialysis on a portable machine once last week, and that the doctors felt positive enough and *the numbers* were good enough to take them out. This is especially good because the lines were in a vein in her neck which was uncomfortable for sleeping.

Physio therapy continues - with Rebel using a bicycle-like contraption as she sits in a chair. The first time she used the bike thingy last week - she could only cycle for about two or three minutes. Yesterday she cycled for about 20-25 minutes and sat in the cardiac chair for over an hour in the afternoon and at least as long earlier in the morning.
Her appetite is returning - even making some of the hospital food look good. I really have to thank the dietitians and nutritionists because they are trying hard to give Rebel food that she will eat. Picky girl that she is.

For those of you in my area there will be a Fundraiser Event added called Music from the Heart - Youth Centre Fundraiser to support our Rebel on Feb 15th at the local pool hall. Contact me if you're interested in attending. The bands are all young people in the area who wanted to participate. And the Youth Centre counsellor has kids videotaping messages and the bands and burning a DVD for our girl to watch after the fact. The money raised will be presented to the Heart Institute at their telethon on the 17th of February. I am so touched.

Christmas a Month Later.

We took all of Rebel's presents to the hospital for her today. SU went earlier in the morning with a non Christmas gift - a lap top computer - so she could get connected (there is access!) and do school work. Rebel wants to write a book about her experiences and the laptop will help her start keeping a journal and getting ideas written down about all she is going through. In a generous move RebelTweeny transferred Rebel's pictures and music to the laptop, and that was an added surprise for her.

Rebel's favourite teacher and the coordinator( principal) at her school were there for a visit this morning. She was thrilled to see them and was told whatever she needed to get her school work done - it could be accommodated.

Opening her presents tired the girl out somewhat, but she was very happy. Two full seasons of The Hills, movies on DVD, new make up, gift cards and the usual assorted stocking gifts made for a good day.

I cooked some pirogies for her and took them in for her supper. A special treat as she is on a no added salt/ low sodium restrictions diet still.

She does continue to improve daily. The hospital transplant committee continues to review her progress to determine when she can get listed once again.

The BF gave Rebel a teeny tiny diamond ring. The SU is beside himself. He is actually vocalizing what he thinks about this latest development. As much as we like the BF, he does need to get his act together in a much bigger way. He doesn't have a decent job really. He regularly walks off the job if something annoys him - no health plan - hugely big for our girl and more long stories that will not take up space on my blog. At his age, he's nearly 29 - he should be well on a path, but behaves more like an 18 year old without focus. And as devoted as he is to our girl, the SU and I agree on this, that a *formal* engagement at her age and stage of life... really isn't appropriate. SU saw the ring and nearly flipped. The BF aid, "Well... I was going to ask you or tell you... but I let things get away from me... " sigh... The interesting thing is, that the BF doesn't know the *real* Rebel. He met her and got to know her in the hospital. He has only known her as a sick girl who isn't very active. She gets a new heart, and gets her life back, this man could be blown away. I don't know how this is going to work itself out.

And frankly, Rebel has other things to deal with before thinking about life happily ever after.

Executive Privileges

I held off writing because the nurses told us they were wanting to move Rebel to another part of the SCICU- a room on another floor with windows. That happened yesterday. It's a bigger corner room - good for her physio and for her big VAD machine. But the best part is there are three big windows that face the street so she is finally seeing if not getting some natural light. The staff have nicknamed this room in the SCICU "The Executive Suite" because of its size.

Rebel still has her emotional moments... and this is a good thing. Everything now is starting to overwhelm her, but she is also having her typical "crusty" moments. A good sign say the nurses. Getting back her real personality is helpful as she moves through her recovery.

We are seeing improvements daily in her physio therapy work. She moved rooms by sitting in a wheel chair rather than staying in bed. She has started walking a few small steps, as well as doing the necessary muscle work - knee bends, squats, up on her toes, and lifting her arms. She finds all of this exhausting and difficult but is working hard to help herself.

The food has changed to "real" food rather than the minced stuff. It's almost like room service at a hotel we joked. The special room, a food on a menu you can check off. A diet technician came down and asked about the kind of food Larissa liked - vegetables, fruit, etc. So they are trying as much as they can within the confines of their menus to try and give Rebel food that she will actually eat. And they will check to see how she does over the next couple of days.

Rebel's godmother was here for a visit too. They had a good chat. I ended up having dinner with her last night at a restaurant. First time I had been anywhere except for hospital, home or church. It was nice to be out.

The hospital has had to order her a portable version of her device as the ones they already own are being used. So they expect to be able to switch her from the big machine version to the portable version after the machine arrives and they've tested it. This will give her mobility and ability to walk even more,

We are making progress..... thanks be to God for hearing prayers from soooo many people. Thanks be to God also for an amazing group of dedicated health professionals who are doing all they can to ensure our Rebel will be able to accept a donor heart.

Communicate.

Rebel had her nurse call me yesterday and wanted me to come to the hospital earlier than I've been getting there. Her nurse said she's been weepy. I got there and she was sleeping. She had had a little fever overnight - they couldn't find a reason. Her"numbers" on the VAD were a little higher and they were checking out the options. She was given a blood transfusion - her hemoglobin was a little low and that seemed to have helped. Rebel said she needed a mom day.

We were having a bit of a wind and snow fall yesterday so traffic was so slow. It took me over an hour to get to the hospital. That was frustrating. By the time I got there and she was having a nap so that was good. The food wasn't too bad yesterday either but even eating seems to take a lot of energy. She did a little physio too. Getting up... taking a few steps to a chair to sit up. So this was good for her.

SU has been doing things like arranging visits with her friends without letting me know. I had a word and suggested that he needs to COMMUNICATE these things with me to make sure we didn't overload her. I got one of his "what's your problem" looks." I have learned to *explain as if to a kid* and reminded him that she is *our* daughter, *we* need to keep each other informed... blah blah... Right now Rebel needs to be told in advance before she has a visit because she gets all emotional and weepy. It helps her to know in advance who is coming.

On the other hand, Rebel told me that her father has told her loves her. She says she *makes* him say it. This is a breakthrough as is this a father who really is not demonstrative nor very warm with his girls. I don't remember the last time he told them he loved them, or even gave them hugs. ( that's a whole other post) It nearly broke my heart when she told me, "I think dad really does love me, but for some reason he has a hard time saying it. I'm working on it with him."

It shouldn't have taken THIS to get him to that point.

Tube free.

The other chest tubes came out today. And so did the feeding tube. Rebel was thrilled. Though the hospital food she is on now is less than delicious looking. Everything is either pureed or minced. Nothing liked pureed green beans. Why not broccoli, or carrots or sweet potato... vegetables that actually puree all right. Green beans... not so much. The nutritionist came by and told Rebel they'd send a dietitian in to see her to help choose some menus. She can also order up "food by mom" as long as I follow their requirements. I believe this will help.

That plus two sessions of physiotherapy today and yesterday and Rebel had a pretty busy day.
The doctors conferred and things seem to be improving daily.Rebel hates when they do their rounds because they stand in front of her room and talk about her... her charts, what went on since last set of rounds. Today she got feisty and tried to holler out to them, "please share with the rest of the class!" I had to roll my eyes. Understandable patients don't like being talked about. Her lead doctor did come in afterwards and let her know what the next couple of days would be like and what they hoped for her as she improved. it helped the anxiety levels come down substantially.

We were given the manual and how to guide for her VAD/Thoratec device. - how to take care of the batteries, how to trouble shoot it, and a whole lot more. This is a little daunting. However it is a step in the right direction.

Saturday evening, Rebel asked the BF what the hell happened to her because she really didn't understand why all the nurses were so excited every time she did something that was an improvement. So he told her the whole story. She doesn't even remember having her wisdom teeth extracted. The only thing she remembers is the first shock from her defibrillator and waking up with a scream. Anything after and before that is wiped out. She told me the next day she was overwhelmed. She's crying some too which is good - the emotional release is helpful. She hates crying though. I told her if she cries I'll try not to so that there is only one person crying at a time. And for me, who cries for happy, sad or scary, that's a big deal! That got a smile.

We watched Star Dust this afternoon. What a good movie. Right up there with The Princess Bride. I'm trying to convince her to watch Top Gun (one of my all time favourites!) with me, but she's rolling her eyes.

Blue Slushie Reward!

Another positive. The speech pathologist came by today to see how Rebel was swallowing. She was pleased with what she saw and Rebel was rewarded with ice chips. The smile on her face was amazing. You'd have thought she had had tasted the finest wine, the best of chocolate or the ultimate in gourmet treats. But it was ice chips. And when Rebel asked if a slushie was in the same league as ice chips... the speech pathologist, after a couple more tests, including swallowing some icy cold water and a couple of teaspoons of apple sauce, said. "sure - why not!"

Rebel crowned her Best Friend Forever! And soon enough a blue slushie made its way to Rebel's bedside courtesy of buddy of the BFF! Rebel loves this guy too. And for a young one... he's got a killer smile... but ears stick out... so the Mrs Robinson thing isn't firing.... but... wait... it's not about me is it? And once again Rebel closed her eyes as she took a mouthful of icy cold blue slushie and she savoured the taste and the moment.


She said the slushie was better than her first *legal* drink in a bar! For the American friends.. legal drinking age where we are is 19... across the river next door in the next province it's 18!

Rebel also spent an hour on physiotherapy today - and managed to sit up in a cardiac chair for a short period. She is working hard and it is showing in the positive steps she is making. We are marveling at the miracles of modern medicine, traditional prayers, uses of energies of the body and mind, and even the woo-hoo factor.

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.