Saturday, October 31, 2009


So it is Halloween day. We had to cancel the party. Gavin is sick. Not exactly sure what is wrong. No sore throat, a wee bit of a fever but no consistently (seem mostly before bed), no throwing up, just a really lethargic little boy with no appetite, a snotty head and not much interest in anything. He didn't even object when we cancelled his birthday party.

He did insist that he could go trick or treating. He was laying on the floor in his costume at the time. I told him he could just go to the neighbors across the street and then he'd have to come home. His Daddy carried him home. I just don't know what is up. Even with all the scare and hype I don't think it is this H1N1. He just doesn't show the symptoms. There is no word on any other flu going around - no one is interested in anything else. Hummpph.

If he is still sick tomorrow I'll drag him to the doctor on Monday. Poor boy. He was actually animated for a short period of time while he opened his birthday present from us. I think he really likes it but it takes a fair bit of figuring out and assembly. It has lots of little pieces - so we have to watch Mari.

The girls had fun this evening. Bronwyn was so excited to go out trick or treating. She had a blast and quietly at a heck of a lot of candy before I noticed this evening. I had sorted through her bag and set all the stuff with fat in it (mostly chocolate stuff) aside. She can have it later - only one week left - hurrah!!

Brad and his new girlfriend, Marci, came for a visit too. I forgot they were coming and decided to try an "experiment." They show up and I got so flustered. I served the most horrible meal. Really I did. I'm not exagerating. But we laughed about it and I assured them that if they came again I'd do my best to make a few improvements.

Mari just enjoys everything! She is such a little cutie. She is just in there wanting to do everything.

I am going to try get a better night tonight - I still feel awful. Grrrr.

Hope you all had fun today and didn't eat too much candy!

Friday, October 30, 2009

Tomorrow will be busy

Tomorrow is Halloween and a Saturday. So as a result we are having the big man's fifth birthday on the actual day. Which is making for a crazy busy time for me. And I still feel rotten. Really I do. I was actually feeling almost over this nutty cold this weekend when Sunday night it hit me again, or maybe a new cold. Well, whatever it is I'm done!! I've had enough!

I have been scrambling today to try and do what I can. But I have had some issues. Well, lets just say one issue. Mari. Sheeesh the trouble that child can get into. Really she ought to be far more supervised than she is. Honestly!

There were a few cute moments too, but I think for me the highlight was the "laying on her belly face down" temper tantrum. That was pretty special. Neither of my other two have ever done anything like that. I blame it on the red hair (call her little Tom).

Gavin is still feeling pretty sick, pretty stuffed up still. I hope he feels back to normal for his big party tomorrow. I'd hate to cancel at this point.

I'm going to post a picture of his cake today, cause he won't see this, and if I post tomorrow it will likely be the trick-or-treaters that I post. I doesn't show too well. It is a dinosaur dig - in case you can't make it out. This is the third year running we have had a dinosaur cake. I'm running out of ideas.

I have to try find some energy from somewhere. Oh, and I can't just ask Wes to bring supper home, because we are still on this beastly diet. Grrr.

In case you are worried that I am cranky, this is nothing. You should have seen me on Wednesday, I nearly took a round out of a little snot nosed crossing guard at Gavin's school. Now that day I was grouchy. REALLY GROUCHY! Today, a bit annoyed and busy. But OK.

Thursday, October 22, 2009

Cardio appointment

Bronwyn had her cardiology appointment today. The fluid situation is great. It has cleared up entirely. We do need to stick to our diet though for the remaining two weeks, so that we don't have another set back. We want to ensure her body has the full time allotted to heal.

I was very encouraged by the appointment. Thrilled with how Bronwyn is doing.

Here are a couple pictures from the weekend. Mom hosted a little birthday party for Mari. I just didn't have a big party in me last weekend. Mom was great, it is a fat free cake with fat free icing. Yeah for Grandmas.

I better get myself organized here soon - because the big man turns 5 in just over a week. No fudging on his birthday - he's old enough to notice!

I'd write more but frankly I am too tired to think of anything tonight. Just wanted to let you all know how Bronwyn is doing.

Saturday, October 17, 2009

Plugging along

We are doing fine. Kids are great. Bronwyn has been doing well. I was a bit worried about her for a couple days, her breathing seemed a bit more laboured than normal but I think I was watching her maybe a wee bit too closely. She continues to heal and to look better every day.

They were able to pick out their Halloween costumes this morning. I'd rather have "home-made" costumes - but we never seem to have enough time. Both Gavin and Bronwyn were very specific in what they were willing to get. I offered up several options but they were only willing to pick just the one costume. I'll have to get some pictures soon.

Mari didn't care which one I picked - she was asleep.

Wes and Gavin went out for lunch - just the two of them - for fries. Both boys have been such great sports about participating in Bronwyn's wacky little diet. I thought they both could use a treat - as long as they don't tell Bronwyn!!

I have been finding it quite hard to adjust to our routines again. Not sure why, still sick, very tired and well, just recuperating from such a major interruption to our normal life. I am sure it is very normal but daily life is requiring a great deal of energy.

I have a tendency to underplay how I feel and what I have been experiencing, but to be honest I don't remember ever having such a nasty cold nor having it last so long. I'd be worried about H1N1 except I have never had a fever. I have also ruled out meningitis (there was a little baby across the hall from us with meningitis). Maybe its bronchitis. I usually wait until I am satisfied with my own diagnosis before I venture to the doctor. I don't like surprises.

I hope this week will feel a bit smoother. Although we have a ton of appointments this week. Several for Mari and a big one for Bronwyn.

I thought I'd let you all know how we are doing.

Wednesday, October 14, 2009

Mari is one

Today is Mari's first birthday. I don't have a lot of energy to do much of a party for her. Thank goodness she is only one and won't remember. The third child always gets the shaft.

She is such a little maniac. Her little personality is really coming through these days. At times that is scary and at others really funny. Mari sure has made a difference in our world and we are thrilled with her. We have several pet names for her. Gavin's favourite is "the little chalk eating monster." She will find the chalk and eat it! The little sneak.

Gavin went to school today, didn't cry and was such a big boy. It would appear that Grandpa fixed the situation. Yeah for Grandpa.

I would post pictures of the kids but I think I forgot my camera at Tom and Pam's. So no pictures.

We went to the Wiggles last night. Bronwyn loved it. When they dimmed all the lights and sang Twinkle Twinkle Little Star she smiled as though they were singing it just for her. Cutie pie.

Well - that's it for today. Have to go fix another no fat meal (and I mean not even olive oil). My latest challenge!

Sunday, October 11, 2009

A brief moment

We are home now and have some of the laundry done up and groceries and a few things settled. The kids are upstairs yelling at me - so things seem to be back to normal. Well if they ever were. Haa haaa - OK enough humour!

It has been my experience that time softens the memory of our experiences. Much of what was painful over the last two weeks will slowly subside and give way to much richer and longer lasting memories. There will be a grain of unpleasantness that may never go away, an understanding that hopefully helps us be more sympathetic and loving to others in their own trials.

My lasting memories are:

How kind a good family can be. How it feels to be embraced by the love of family, the warmness and kindness that gives strength for all trials. We have the most amazing family. Those near and far who have been so great.

The love of friends and what a boost that is. The friends who emailed, posted notes here or on Facebook, called, prayed, thought about us, sent cards, came to see us, and the list goes on. We are so grateful for friends.

Other parents, many who have become friends. Kim and Shannon, there is a special bond that we feel with your families. We have walked through some dark times together and have had similar but varied experiences. We just want you to know how much we are invested in your children and their success too. And we so appreciate your support.

The wonderful staff at the hospital. Now that I am out (ha ha), I can talk about how much I love that hospital - I just don't like being there. Words can't even begin to describe how I feel about Dr. Rebeyka. What do you say to a man, how do you thank a man who has done for our family this enormous thing. For him it is his "day at the office." But for us it is our child. From the surgeons to the doctors, nurses and the whole staff - we are so thankful.

Wow - this is sounding like an acceptance speech at the Oscars. So to keep that theme. I'd like to most of all thank God. He is our strength, he is gives us hope, he helps guide us, he comforts us. We are thankful not only for our faith but for our God who is all powerful and can help us navigate the trials of life.

On this, Canadian Thanksgiving weekend, I ask you all to allow us to thank you for being with us on this journey and for caring for our family. You (and yes I mean you) are a blessing to us.

Thank you all - God bless all your families!

Friday, October 09, 2009

Thursday, October 08, 2009

So things change

We were about to go for a walk with Bronwyn when Lois, on of our favourite Nurse Practitioners (of course Shirley is our absolute favourite) told us to go back to our room for a bit.

They needed our room and we were going to be discharged for the night and brought back tomorrow to have her chest tubes removed. So we are at Tom and Pam's right now, chest tubes and all. We have to be back by 7 am to for blood work and then we go upstairs to have them remove her tubes. After that they will send us on our way.

A day earlier than I had scheduled - not bad!

I best run, a little girl is harassing me to get her strawberries.

I stayed last night

And now I feel worse than ever. I tell ya this cold couldn't have come at a worse time.

The team here is all aware of my agenda. To be released on Friday. Dr. Dyck suggested it now may not be until Saturday, but I warned him I might just up the anti on my nagging if they do that. He told me he's anxious to get rid of the grumpy patients (in our case parents). So funny!

I do hope that we will be out of here tomorrow, if not tomorrow for sure Saturday.

Grit, bear it!

Tuesday, October 06, 2009

Another day

So Bronwyn was going well today. We had her up and about a lot. She even climbed the equivalent of 4 flights of stairs. The fluids are hopefully down - but we won't know until the morning.

We sort of pushed our luck with her today and she was in a bit of pain this evening. She finally settled and fell asleep. I don't like to see her in pain but it is good to see her playing and doing somethings fairly normally.

I have decided we are leaving Friday. Now I just have to convince everyone else. I don't miss an opportunity to discuss our discharge on Friday with any of the staff. Some have been a bit confused because they haven't heard that we are on the soon to be discharged list but well, they haven't checked my notes yet.

I am doing quite a bit better. Wes stayed again tonight and I hope to be coughing less tomorrow so that I can stay over with her.

They had a turkey dinner at lunch for the patients and families. It was very nice. Lovely little event in a gloomy sort of place.

Well I have more I could tell you but I am too tired to remember it all. Oh like a surprise visit from Kim. Wonderful to see you, a bright spot in my day!

Monday, October 05, 2009

Better day

I had a very good sleep and while I am still struggling with a bad head cold, I do feel that I am on the up swing.

Bronwyn is doing well today too. The fluids are still an issue but I am hopeful that it can still be resolved in the next few days. Bronwyn was chatty and had more energy today. She just seemed a bit more like herself. She kept recalling how Uncle Jon tries to whistle (he pretends he can't and spits all over). She laughs and giggles as she remembers. So nice to see her more animated.

Kennedy and Pam came up to see her this evening. That was great for her. We took her out to the waiting area and the girls played together. Auntie Pam even made her some low fat chicken soup - which she ate and enjoyed greatly.

Wes is at the hospital again tonight. We hope that I am over the worst of this cold by tomorrow and can return to do my part tomorrow night - give Wes a break. What a great husband I have.

I am just off to bed now. May God bless you all.

Sunday, October 04, 2009

A bit of a set back

Bronwyn is still having fluid leaking on her right lung. They have tested it and it has kylo in it - which means that her lymph system is leaking. This is a common side effect of the Fontan. So she has to go on a low fat diet and they hope to control the fluids that way. If they can get the fluids to stop then she is closer to getting home but the diet will have to continue for some time.

I found this pretty upsetting, not because I'm upset she has a complication. It is more that I am afraid that this is a domino affect. She isn't eating well and we have to force her to drink. The only things she has been willing to eat will now be cut out of her diet. I'm just worried she'll start having problems with her food and liquids and then they'll have to use an IV and then we are just on a different and somewhat downhill track from there.

But that is just me being pessimistic. I am also feeling pretty sick. This is the worst head cold I have had in ages. I'm too afraid to spend much time with Bronwyn. I am hoping that a good night sleep will do wonders for my cold and my attitude too.

Just pray for our little girl. I really want to get her home in time to take her to the Wiggles. Even now she keeps mentioning the concert - she is really excited. I just want her to be home.

Saturday, October 03, 2009

Can't keep a princess down

Today Bronwyn is doing quite a bit better. We tried to have her in her room as little as possible. I seem to be getting a bit of a head cold. I was not sure this morning and just feeling a bit sick but not sure so I was wearing a mask just in case. Of course I wasn't aware that I'd be causing mass hysteria by doing this. I wasn't coughing, sneezing, blowing my nose or anything. Just being cautious. When they started questioning me about why I was wearing a mask and they were acting all cagey - well I snapped - a bit! But oh well - I'm trying to behave.

But now - well now I am feeling pretty snotty - so Wes is staying again and I'm going to keep my contact minimized until I'm in the pink so to say.
We tried to have Bronwyn out of the room as much as possible today. She played at the "Beach" (a special play area for kids at the Stollery) twice. We also took her downstairs to the cafeteria for supper. We also took her for a couple walks and several trips up and down the elevators. She really liked the elevator trips.

We have been forcing liquid on her. She is on restricted liquids but is having a hard time drinking even that amount of fluid. Last night they topped her up with IV, but that came out this morning. So if they have to top her up tonight they would need to use an NG tube (a feeding tube through the noise). So all day we have been telling her to drink or the doctors would need to put a straw in her nose to feed her. The line between parent and school yard bully has been a bit blurry today. When I left she was in reasonable shot of her target - so I think she will be OK.

I am hoping she has another good night. I also hope I can just sleep this cold off and have it gone in the morning. I just don't want to feel so stressed every time I go see her. I'm terrified I'll make her sick too. I go nowhere near any one else's kids and am slathering myself with antibacterial stuff.

Kennedy, Josh and Gavin did a bit of mad science this evening. A volcano I believe. Gavin and Mari have been getting a lot of attention.

Grandma, Grandpa, Gavin and Mari will return to Langdon tomorrow. Wes and I remain and hope to be released Monday or Tuesday - Monday would be better, but I'll take Tuesday also.

Friday, October 02, 2009

I ditched

So my saint of a husband offered to stay tonight with Bronwyn. Great night to offer since we now have a roommate - a six month old post op. crying baby. Ha - Wes is really going to get points for this.

I'm here with the gang at Tom and Pam's and am hoping to get some sleep tonight - although Mari is still going strong. Kennedy is trying to manage her - what a sweetie (Kennedy that is).

Well - of I go to get some rest. I hope Wes has a good night and that Bronwyn (who will get IV overnight) is perkier tomorrow.

A bit bummed

Bronwyn is still doing well. We were moved to a room where I can stay with her last night. It is not on the cardiac unit but the adjoining one - the one they keep all the contagious kids on. Lots of hand washing happening. I didn't have my bag with me - so I'm on the 36 hour of these clothes. Nice eh?

I got in my head that it would be appropriate that we get released this weekend. I even got our prescriptions lined up to fill so I can do that today. I was just so sure we'd be ready by Saturday. Well on rounds this morning that was dispelled.

I know I am unrealistic. I know I am expecting too much. I know I am pushing too hard. But I know I am more than ready to get my girl out of here.

But, suck it up and behave. My new motto.

Bronwyn is getting more energy. She by times seems in a great deal of pain, but others is more comfortable. She tried to get out of bed to come to my bed last night, but her cables wouldn't reach. So I climbed in with her and spent most of the night in the most crunched position imaginable.

Wes and Gavin are here right now - having a bite. Bronwyn is sleeping. Mari is at Uncle Tom and Pam's with the Grands. She is eating and yapping - "dadadadada." Can't get the kid to say Mom. In fact last night when I saw her she stared at me like, "You look vaguely familiar - do I know you from somewhere?"

I need a better night sleep that is all. I hate hospitals, have I mentioned that.

Bronwyn needs to drink more, pee more and poop. If she can do all that today we might still make my time frame (ok ok - I give up!).