Finally Friday

But yet... Friday we still wait. And Friday becomes a day like any other day, until my Rebel has her life back.

She is healing once again from another drained abscess. The transplant coordinator is bugging the hell out of her and Rebel told her she really didn't need to see her every day because she keeps bringing negative news.

The charge nurse, who was the enemy, ha now become the chief ally. How that turn around came about, I'm damned if I know but a strong ally helps the girl. In spite of some pain where the drainage hole is healing she is doing her physio and doing the best she can keeping her fluids up so get strong.

The BF - while devoted - can be a RAMB-in-training! 'I'll be there at 3' he promises and at 6:30 the girl is still waiting for him to bring supper. At which point, I take back control and tell her I will head to the cafeteria and find her food, given the BF's inability to say one thing and mean it. It's frustrating for the girl. And words need to be had with this nearly 30 yr old man who for the most part, behaves as if he is a pimply 14 year old dorky adolescent. Inexcusable really. The Rebel plays him like a good celtic fiddle reeling him around. Good on her I say! The BF will not know what hit him when the Rebel has her heart and life back and is ready to move on with life. She will be a force. And I pray then after all the rest of it, that he doesn't hurt her too badly. She is much better than he is. And he is NOT good enough. But I step back from this one, and allow her dreams of wedding dresses and pretty shoes since it helps her get through the day.

The SU - was invited to - of all things - a toga party tonight. The 30 year old engaged and living together singletons are throwing a toga party to celebrate birthdays this evening. I will be curious to see which sheets he takes. He's a rather greying hirsute man with skinny legs and of course, older than the average 30 yr old, so as usual, he may not don the theme of the night attire and will show up in his regular jeans and t shirt slinging his folk guitar. It's also his regular hockey night, and it is a very rare occasion that he misses this unless he is sick or in pain of some sort.
Maybe I am missing something but aren't toga parties what you do when you are 19 and living in a dorm? Are toga parties something that working people of certain age do? Me? I would host something a little more upscale - call it Feast of Ancient Rome party... costumes of the day required: centurions, senators, roman royalty all invited. But Toga party does imply a certain debauchery doesn't it? A la Animal House. So SU may go and feel the need to be 25 again and show up at home Saturday around 7 AM .

A great example for the RebelTweeny isn't it.

Outlined Thoughts.

Rebel had another infection on Friday, but this time it was drained quite quickly. It slowed her up over the weekend, because of the dressing changes and some "leakage" but at least it didn't take as long to be dealt with.

Rebel also had a meeting with everyone who is key to her care. She was getting mixed messages about what the direction was for her and the psychologist she was talking to suggested she get everyone in a room together to hear what people were thinking, and more importantly, hear what she was thinking.

This was helpful. The doctor outlined his thoughts, and told her what he needed from her as did the charge nurse. I believe Rebel felt better after this little chat with everyone. She needs to continue to gain strength, to keep her fluids up to avoid alarming the VAD and to eat properly. he doc gave her an idea of what her surgery would entail and why he either would or would not be in attendance when the time came. They do have plans in place and depending on schedules a very knowledgeable practised group will handle her surgery.

The weekend was quiet. Rebel is seriously tired of hospital food but realizes that fast food isn't the answer either. I am bringing more meals from home to help her with that. She weighs in at a respectable 125 pounds so that is good. And she is learning how to be patient and yet learning how not to dwell on the obvious either. A tough job for any of us.

The SU manages to show up between hockey play off games. He doesn't really stay very long with her. I guess between sleeping in until 1 PM on the weekends and doing what ever it is he does at home, he stays about an hour and that's it. He did buy a parking pass for the hospital lot, and I tend to use it, which may be one excuse for him, but really - I suspect he doesn't like the BF. Why speculate. I do know the past couple of days when he does get home he races to the tv and we don't see him the rest of the night except between periods.
whatEvEr I guess.

Allaying Her Fears.

Rebel has had a few quiet days. I think now she's so aware of being isolated and stuck in her room that she gets concerned when things change with her body and her heart. The nurses take every thing she asks about very seriously - which is great as she does know herself very well.

The doctors do their best to allay her fears and concerns as well.

Every now and again though someone says something and it does set her off a bit. So with a visit or two with the hospital psychologist it was decided that a meeting with health care professionals, Rebel, the psychologist and who ever else is involved in her care will help Rebel deal with things that upset her, worry her, and even make her feel good.

Her machine was alarming a bit today when she was walking and this had her worried. The perfusionist and the doctor believe it's because her fluid levels are not high enough, she's not drinking enough to keep blood flow moving adequately. So... whatever goes out.... has to come back in. They put her back on a heart monitor just to check it out, but all her other "numbers" and charted things... are A-OK... so as long as she drinks a lot they believe she'll continue to be fine.

She also has a stationary bike in her room to help build strength. She was on it for a few minutes today and seemed to do all right. A little bit more every day will help her be strong for when she has her donor heart.

Not too much going on with the ennuie side of things. The SU has a whack of money in the bank and seems to be taking over the payment of the bills... a first! Ever! So as he keeps paying the bills I too am attempting to build up my stash and need to start an investment fund away and apart from the joint ones that are part of the ennuie. I am doing a leave with income averaging at work so I can take time off with partial salary when Rebel gets her heart. That way I won't need to burn through any more vacation or sick leave. So for the next year I am working at partial salary too. Should be fun!

I've got to hit up the SU to pay for the crappy hospital tv cable and telephone as well and also for whatever clothes RT wants now because of my short term diminished salary. In fact, I think he needs to pay for most everything these days. This is truly a turning point because for the past 25 years, I've always had to deal with the majority of the bills and finances. The mortgage was signed off again. I took a one year term this time. Probably not great, but I did some negotiation with the bank. She knows I am not going to leave at this point, til I have outright ownership and have to re negotiate the entire mortgage, but she also knows if she doesn't give me a rate I want, I WILL leave rather than considering this particular bank for a new mortgage when the time comes.

It's always about the negotiation isn't it.

A Girl Needs Air!

Things seem to be okay with the Rebel. She has been having a few down moments... "why me; I can't keep doing this; I'm tired of this." So I asked the nurse to have the psychologist pop in on her... WITHOUT her knowing it was me. More "we heard you've had a tough week and I wanted to check up on you... how are you doing Rebel girl?" kind of approach. The nurse said she'd get on it this AM.

And who can blame the girl? She's had a tough go... with all these hurdles coming at her.

The infectious diseases team doctor came in to see her and was pleased with how she is doing. They're probably going to keep her on anti-biotics, because they worry about one little bit of bad bacteria attaching itself to her VAD - either inside or on the drive lines and reinfecting her blood. Rather than risk another culture growing somewhere inside, keeping her on meds is the better precaution. It also kicks up her status on the donor list to very top priority as well.

The chief perfusionist has bonded with Rebel. She has teens at home and seems to have forged a good relationship with my girl. She wants to take her out for fresh air today and barring bad weather... it's going up to 12C (low 50s) for a bit today before we head back down to 0/-1 (low 32) this afternoon, she may be able to get out. She's not allowed to touch anything, or do too much but I think a car ride and some fresh air can only be a good thing.

Mortgage is renewed. I went for the one year and negotiated it at the 6 month open rate. SU said nothing. I am counting on the one year rate to give me some breathing room. I can only pray that by this time next year, things will be significantly positive and better for the whole family.

The young one keeps expecting me to take her shopping for spring clothes... but when I ask for help around the house... even letting her choose her chores... I can't seem to get very far.... so rather than American Eagle.. it's gonna be Giant Tiger and Winners!

Holding Down the Fort

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

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

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

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

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

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

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

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

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

Pray it's positive.

Better.

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

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

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

Weekends are always Weird.

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

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

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

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

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

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

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

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

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

God Bless you all.

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.

Thirteen Thoughts on Thursday.

1. How long will the wait be for a donor for a new heart?
2. Will a new heart be accepted by her body?
3. What is the deal with the SU?
4. Is the RT really okay? She doesn't talk much.
5. Work... yeah... I'm on that.
6. Weekend away? Am I ready for it? It's only one hour from town with a great group of girls!
7. Need to keep bringing in food for Rebel as a diversion from the hospital green beans specials.
8. The girl's BF, while devoted, needs to man up and get his own life together and not use my girl as his excuse.
9. Hoping for a good turn out at the Fund raiser.
10.Time to turn on some sort of acting skill to deal with the $387.00 text messaging phone bill with the carpet bagging cell provider... sigh.
11. Must find a Nintendo DS in *pink* NONE to be found anywhere!
12. What will I *wear* at the Telethon?
13.Continue prayers.. now is not the time to let up.

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.

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.