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!

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!

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.

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.

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.

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!).

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!

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.

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!

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.

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.

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.

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.

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.

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.

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!