Wednesday, September 30, 2009

Back to the hotel MacLeod

Great place to stay by the way. Rates are good. Beds are comfy. Company is great. There is a continental bedtime snack that is superb. This travel reporter gives it a 4 out of 5 (one point deduction because it is Edmonton and not Cuba).

Bronwyn continues to improve. She still frequently asks, pleads, begs and even demands to go home. Soon baby soon.

I have been trying to pin them down to what they want to see her do before she can go. That way I can judge how close we are to going. See Jon, not an A type personality at all.

Any how I am tired. I considered staying with her tonight in the ICE room but it is similar to the PICU. There are easy chairs you could sleep in but no beds and there are several patients in the room, lots of alarms and lights and activity. So I elected to leave. Now I am just praying that she sleeps well and doesn't miss us. The nurse assured me that if she couldn't settle her and keep her calm that they would call us to come back.

So off to sleep I go.

Day 3 - Update 2

So I guess we are moving after all. To the ICE unit - a step between the ICU and the ward. So upstairs we go. Well at least for now.

Day 3

We were hoping to be moved upstairs to the ward today. But they are short beds. For now we think we will continue in the PICU one more night. Unless something changes.

Bronwyn's colour looks good and she is increasingly more alert. There is still a lot of road to cover yet, that is another reason they are not in a hurry to move her. I am anxious to have her moved, so we can stay with her there over night.

When any one asks her how she is doing she says, "Good." No matter what they are doing to her! What a girl.

I have met a family, their little girl Kaley is in need of prayers. Those of you who pray, can you include her in your prayers. They really could use a break. A miracle would be even better.

My Mom is likely getting quite tired from chasing hurricane Mari. While Dad is still busy getting Gavin back and forth. Divide and conquer.

Love to you all!

Tuesday, September 29, 2009

The early news

So not much changed over night. They weened her off some of her medications, the medications to help regulate her heart beat not any of her pain meds. Her vital statistics look great. They are pleased.

She wakes a lot and wants to get all the tubes out. She cries when she wakes up.

They have closed the PICU right now for a procedure. So I am out for a bit here. She will be in the PICU at least one more night. They hope they can ship her upstairs to the ward tomorrow. At that point I will be once again a prisoner of the hospital - oops I mean a guest.

I think I have finally found someone who likes hospitals less than I do - my daughter. Between the two of us we'd have her on her way home tomorrow if we could. But patience is apparently a virtue (of which I know little).

The optimism of the medical staff is reassuring and she looks a bit better today.

Thank you all for continuing to watch our progress and for keeping us in your prayers. Our hearts are buoyed up by your love.

Monday, September 28, 2009

Update

Bronwyn had her surgery. She went in at 12:30 ish and they brought her into the PICU at about 5 pm. She is doing well. She is very thirsty and in some discomfort. They hope to manage her pain tonight and just before we left they started giving her water.

We have come home to get some sleep. They urged us to leave her tonight. It was hard but best for her. They will keep her quiet and resting.

This doesn't get easier, in fact, this was a very tough day.

Dr. Rebeyka was very pleased with how everything went. So far she is keeping up her reputation as a superstar.

We are very proud of her.

My prayer last night and today was for God to smooth our path. I am happy to report that while our path was unpleasant it was smooth.

Thanks be to God!

Saturday, September 26, 2009

The things you find on a camera

We are off again tomorrow. I have been packing and pacing like a maniac, or at least that's what Wes tells me. However, I had to take time to share this.

About a week ago I went out in the evening for a VBS meeting thingy and Wes stayed home with the kids. When I got home Mari's shirt was covered in something blue. I asked Wes and he said that she got into the chalk. Now Mari loves to eat chalk. I cram the older kids easel up against the wall so she can't get at the supplies, but she still manages to find bits and pieces here and there.

We call her the "little chalk eating monster." I usually keep an ear open and if I stop hearing activity I get suspicious. The first place I look is the area around the easel.

The event passed and other than a shockingly blue poop the next day there was little after affects.

Then today I was downloading all the photos of the camera and I found this. Ahhh. What can you do eh? I suppose it could have been worse.

video

Friday, September 25, 2009

Crazy day

Wes, Bronwyn and I drove up to Edmonton yesterday afternoon. We made good time and were able to get Bronwyn to bed and have a nice visit with Peter and Marj (who have a lovely home by the way).

We had to get up very early and go to the Pre-admission Clinic by 7 am. We were on time even though they moved the public parking and the ped-way and the signage wasn't the best as we made our way through the halls.

We expected a long day. In fact I had packed a bag of tricks, toys and things to amuse Bronwyn while we waited.

Things just started moving after we got there. We left the hospital at 11am. In that time they did X-rays of Bronwyn's chest, an EKG, an Echo cardiogram (a long one too), blood work. We also had visits from a fellow on Dr. Rebeyka's team, Dr. Rebeyka, the anesthesiologist, the physiotherapist, a social worker and a complete work down by the PAC nurse.

We didn't wait more than 5 minutes for anything. You could have knocked me over with a smile by 11 am. I could not believe it! Other times we have been to Edmonton we have waited and waited and waited for everything. This was truly amazing.

I thought a lot about several families we are friends with when I read a sign in the cardiology clinic. It said, "A gentle reminder that the wait time for clinic visits is between 1 and 4 hours." 4 HOURS! Boy - I'd be mental by that point. I hope that was sarcastic. How do you do it Kim and Shannon?

We got home just after Gavin. We learned that not only did he go to school easily for Grandpa but Grandpa didn't even have to go in the building. No way!! I knew that would happen. See there is good reason to believe that the grandparents should raise the young kids - they are just better at it.

Gavin did report that he cried. They did the "Harry Fox Run" (hee hee) and they made him do big laps of the field, 3 laps in total. Apparently he got too tired and cried. See he is just like his mother.

Bronwyn was just a champ today. Really she is so amazing. I'm so proud of her. Even after the blood work she was quick to be distracted by the lovely stickers she was given. Princess have to do their best no matter what the circumstance.

Mari did great for Mom and Dad. She slept through the night - yeah for her. They insisted that she didn't "walk" yet. They were emphatic enough that I suspect she did walk. I hope she walks a bit tomorrow so I can try catch it on video.

Mom assured me that they would do fine. She said, "We raised three kids, and they all turned out, well pretty bad, but we learned a few things I guess." Cute eh?

I feel pretty excited tonight. It was a lot of driving extra driving but it is so great for Bronwyn to be home for the weekend. Hopefully we can have some fun and go up to Edmonton recharged and ready to kick some congenital heart defect BUTT.

Wednesday, September 23, 2009

New from our house





I realize it has been a week since we posted. I am sorry I haven't been sharing news - I have been too busy worrying about things of which I have no control. Effective I know! Good use of my time - yup that too.

Anyhow, Gavin got sick last Thursday - really sick, cold, cough etc. I was sure Bronwyn would catch it and the surgery would be off. But he is better and Bronwyn is still symptom free. I'm still just holding my breath but for now we seem to be on track.

Mari is a mischief. As I sit trying to type she is climbing up the stairs. As I rush over to get her she giggles and tries to get away. She is standing a lot. I have tried to get video of her standing but she never cooperates when I have a camera. Oh gee, now she is standing on her little musical chair - not at all scary! And yet she won't stand when I have a camera focused on her. Girls!!

Mari is also very close to walking. Tonight she actually took one step - of course no cameras. I am sure she will start to walk next week when we are away. I have asked Mom and Dad to make sure they get video for us.

Yes, Mom and Dad are going to keep Mari and Gavin here while we head up with just Bronwyn. While this splits up the family it does seem the most simple answer. Tomorrow night we are headed up for just the night. Bronwyn has an appointment on Friday. We'll head back for the weekend.

This makes it less stressful for me. I don't have to do all the packing and organizing right now. I can put some of it off until Saturday when Wes is home. Its more driving but I think we can live with that.

Gavin is still fighting kindergarten. I have informed him that he is going against law, government, society and bureaucracy- all in one. He can't win - but he doesn't seem to understand his odds.

We've had bizarrely gorgeous weather. Today it was 32. Hot!

I will try give you an update on our appointment after we return.

Thursday, September 17, 2009

A few pictures






I have been taking lots of pictures but I haven't been downloading them. So I have a bunch. Here are a couple of my favourites from the last few weeks.

Monday, September 14, 2009

We have a date

They will be doing Bronwyn's surgery at the end of September, two weeks from today.

You can pray that we all stay healthy and cold free in that time.

Tuesday, September 08, 2009

Wow it has been a week


Time seems to be just flying and yet... last week felt like one of the longest in my life. I feel like I am working again - tied to a schedule. What a bummer.

It has been an adjustment for the whole family, this school business. But things are coming. Gavin is still reluctant to let us leave him there but once he gets over his initial anxiety he enjoys himself and he's always happy and babbling about everything he did when I pick him up.

Gavin's big interest these days is Checkers. He is good too. He beat me tonight. I mean he is really good (I'd rather say that than admit that an almost five year old can beat me with little effort).

Bronwyn is doing great. Waiting! She talks so much these days. Talks and talks and talks and talks - not all the time but when she gets on a roll - whew!

Mari is getting so cute. She can stand on her own now. A bit wobbly but she can do it. If you start to sing she begins bouncing and singing along. She is very responsive to music. She just watches the other two and just wants to do what they are doing. Mari is a very observant and curious little girl.

Me, well I have been making crab apple jelly. We have a large tree in our back yard but we have never bothered collecting the apples before. This year we did. They are small and tart. I made one batch of jelly, just from the apples I could pick from the ground with the kids. Wes got so excited by this that he went and picked more. Two large buckets more. Gee thanks honey!

So I have been making jelly for days, I can't devote a lot of time to it. Mostly if the kids are napping or asleep at night. Anyhow, if you want some give me a call - but I won't ship it so out of town folk are out of luck.

So as you see life is ticking on, nothing new, nothing exciting and yet every day is a new adventure.

Tuesday, September 01, 2009

Mid week blues





Gavin seems to be enjoying kindergarten, once we get him to stay, that is. Sheesh! He is giving us a run for our money, but I am sure it will be short lived (actually I'm not at all sure of that - I'm just trying to make myself feel better).

We are all just plugging along getting used to our new routine.

This weekend we went for a walk in Fish Creek Park, we took some nice photos.

They are sweet kids! Crazy as little bandits but sweet!