Thursday Thirteen

13 things I don't like to eat.
Just a little diversion from SU antics
and Rebel prayers.

1. Hospital food doesn't matter what it is... it really is unappetizing.
2. Any kind of squid... calamari is squid... no matter what you call it!
3. Lima beans.
4. Campbell's Chicken Jumbo soup disgusting-ness in a can!
5. any kind of organ meat - sweetbreads, liver with or without the onions.
6. Ox tail anything -
7. Clams (shudder).
8. Really really spicy anything of any ethnic origin.. if all I taste is heat... it's too much that goes for curries, chillies and any kind of stew thing.
9. Instant coffee - swill.
10. Instant oatmeal - sludge.
11. Bottled ceasar salad dressings of the thick white variety- a gazillion calories, high cholesterol and a wall of sodium.
12. Alfredo sauce made with flour see #10 with at least a dash of #11 stylings.
13. Jellied anything... salads, fish, molds. like swallowing congealed mucus.. Lettuce and jello do not belong together.

Wordless Wednesday

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.

Neither Betwixt nor Between

I read a great line a book yesterday and I can relate.
"I'm in marital purgatory through no fault of my own." I am neither betwixt nor between, but stuck in this place. I am married, with out ANY of the benefits of a real marriage. I am separated - according to the SU - without any of those benefit.s Purgatory. Not much I can do about it at the moment, but eventually, I'll be out of this particular place. I'm not feeling sorry for myself at all, it's just that I have a tough time deciding what my status is. Not great fun. But this too.... shall pass.

The fund raiser went well. It was planned by young people for young people. There was a nice crowd including friends, parents of friends, and others. They raised $1000 for the Heart Institute which was presented live on television during the broadcast on Sunday. Not bad for a bunch of kids who are either in school, and/or working. Makes me want to throw my own fund raiser now, with people I know who are musically talented - it would be great fun. I had any number of local celebrities chat with me and ask me to keep them in the loop about Rebel's transplant. It was pretty cool. I am still working on my Spice Girls angle, but man... this is a tough one. Now that I have some media people I can talk to, I shall see what I can ask for.



Perhaps next year once Rebel has hopefully been through her transplant. Rebel continues to gain strength, but really wants to be done. She is doing well most days, but has moments where she just wants to be at home.

I went back to work today. Feels good. They missed me. I am not quite indispensable, but clearly I am needed. This is a good thing.

Five on Friday

because I missed the 13 on Thursday

1. Seriously, it's NOT about you. NONE of it is. - You might think I am talking to the RT, but no... it's the SU. Of course it is.

2. Yes I know you don't have the infection and we want to keep it that way so your BF has to comply with the protocols or he will NOT be allowed to visit at all until you're cleared from this thing. - Nurse Ratchet reading the riot act (gently) to Rebel about her BF not wearing gloves and mask while visiting her. She is in isolation due to testing positive for the MRSA virus...it's not in her body but she has the bacteria in her nose ... and it needs to be controlled. Three weeks of negative tests before isolation is done. Negative result - week one this week!

3.I believe I just might be experiencing not *quite* hot flashes... more like hot sparks... that would explain not sleeping well I think. Typical symptom of this U*changing* phase in my life and body. ( oh great... she rolls her eyes... ) That would explain the urge to seriously smack the SU as he finds fault. SEE no.1

4. I am thinking about a weekend away.. Just an hour out of town... will see if I am comfortable with this. A little scrapbooking.. a little spa... plus buffet food and laughs with a great group of girls...

5. More snow... more snow... oh joy! ( see photo... snow is way higher than my car!) We NEVER had snow days when I was growing up. What is it with snow days anyway? And we had colder days, and even way more snow!

Wordless Wednesday

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.

Music From the Heart.

For those who can't be at the Fund Raiser - Music from the Heart - next Friday. Here's a sampling of the music.

Dollhouse Accessories are young men in three of our local high schools and Open Sky is a local Christian Rock Band. ( though many of the kids attending the concerts don't even realize this... they just like the cute guys and the music!) isn't that always the way.

I don't have links for the other two performers. Apparently both these bands have a big local following and that alone will get people in the door.

Enjoy!

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.