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.

Thirteen on Thursday

13 things about long hospital stays in the ICU

1. You get to know the nurses' shifts almost as well as they do.
2. You anticipate Doctors rounds and feel like contributing to their discussions.
3. You change sheets on beds the same way they do in the hospital.
4. The cafeteria people ask you if you want *the usual* when you come in for morning snack.
5. The Tim Horton's guy at the hospital location has your decaf medium hazelnut double shot ready before you get to the front of the line and order it.
6. The volunteers all know who you are and ask about Rebel.
7. Dry skin and rashes from being bed ridden are not nice.
8. Using a real toilet is a serious accomplishment.
9. Eating a hospital meal - alll of it - is a serious accomplishment.
10. Visiting hours don't matter when you are family.
11. Nurses will do anything to ensure a patient is comfortable.
12. IT geeks are IT geeks everywhere and enforce policy whether or not it makes sense not understanding a 19 Yr old needs high speed access to her laptop.
13. The entire team WANTS this kid to get better and are doing EVERYTHING to get her there. Short of the IT guy!

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.

Two down - Three to go!

Two of five chest tubes were removed today. "The numbers" showed that they were not draining any longer and it was time they came out. This was a pretty quick procedure... but it kind of freaked out our Rebel. Now that she is wide awake and firing on most cylinders her fear of pain is kicking in. The nurses reassured her... no worries... we take these out.. we don't let the doctors near you. And three of them were around to get two tubes out. She was fine afterwards. The pain medication probably helped.

Rebel is continuing on physiotherapy twice daily during the week. It pretty much exhausts her every time, but she manages to get done the work that they need her to do. Even sitting in the cardiac chair for longer periods of time shows how strong she is getting.. Thirty five minutes in a chair and we're pretty happy.

A couple more firsts yesterday and today. First glass of milk today. More smiles. A popsicle and even soup. It was cream of asparagus and not well received. Rebel is getting her nutrition through a feeding tube still so she isn't really hungry nor has much of an appetite. They want her to be getting all her vitamins and minerals so feeding tube it is, yet they want her eating real food and need to balance that. So the thought is to only use the feeding tube at night to supplement what Larissa doesn't eat during the day.

We watched Superbad today. A gift from the next door neighbour. Oy! She was laughing which was wonderful to see. I now remember where most men get their dorkiness. Yet at the same time, it was kind of a sweet movie too. For boys this age to be able to express themselves and tell their best buddy "I love you" is pretty important. This must make a difference for men as they grow up. I mean my best girl friends and I are pretty much on this page and always have been, but boys and men... must be a different story especially if it's always been about girls, sex, beer sex ...

Did I mention SU is going out to a bar tonight because one of his young friends has a gig? sigh... I like the guy- he sings his own songs and all, AND he does call us regularly to ask about Rebel, but really, does SU think it's okay to be going out?

Maybe it's just me.

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.

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.