I'm feeling a little sentimental lately, as I watch Piper grow so big more and more each day. I'm sure most parents have moments when they stare at their child and just marvel, something like this: "you're two? How on earth did we make it this far?!" or as you quietly remember how they used to fit cradled in your one arm. Alas, Piper is growing up.
Saturday, June 18, 2011
Taking big steps.
I'm feeling a little sentimental lately, as I watch Piper grow so big more and more each day. I'm sure most parents have moments when they stare at their child and just marvel, something like this: "you're two? How on earth did we make it this far?!" or as you quietly remember how they used to fit cradled in your one arm. Alas, Piper is growing up.
Tuesday, May 31, 2011
Good to Go.
Saturday, May 28, 2011
One week being home: Post-op 1 week + 3 days.
We have all been doing pretty well, adjusting and giving her and ourselves a little more grace than usual. I know I need it sometimes. It is hard to hoist a 25 pound kiddo up from the bum... ahk. Try it next time, trying to get your kid out of their car-seat, or out of a chair or stroller. It is not so easy. But we are managing. It's hardest to tell people mid pick-up "oooooo, don't pick her up by the arm pits!". They are just trying to love her. Anyways, a little thing in the long run.
Her scar is looking pretty good, too. We don't put a dressing on it anymore, as the tape seemed to be bothering her skin. She has been free of for the past few days and it seems to be doing just fine. We just have to keep it clean and dry. We still give it a good saline wash every night and keep her hands off of it. That is a little tough, as she loves to lift up her shirt and point to her belly button, and then she sees her chest-tube scab and says "scar" and kinda winces a little sometimes. That is the ugliest scab right now, and looks like if it were to open again, it would easily become infected. But her paws are always getting to it. We try to tell her just to pat it, or rub it through her shirt, but mostly just leave it alone.
We're also calling it just what it is: scar. It's not an "ou-ee" or "boo-boo". She can say scar and knows where it came from, so we might as well say it. She can sorta say "surgery" and sometimes references it, too.
You can sorta tell from these photos that the incision is slightly raised, but that will fade away in no time. The stitches underneath are still dissolving, I think, so it will flatten out soon. There is just a tiny bit of bruising around the area, but not much. The most annoying part to look at now is all the tape stickiness that isn't going away. Oh well... just gotta wear that skin away, I guess.
We went to my family doctor this week for a check-up and to remove the stitch at her chest-tube hole, and to take a general listen and see how things were. Everything seemed to look good, and continues to look pretty straight forward. Also, the nurse-practitioner (NP) called from BCCH just to check in and see how Piper was doing, which was nice. She just wanted to remind us that her incision could easily get infected and to keep it clean. Right-o. Will do.
For now, we just need to keep on with what we are doing. And we go back to BCCH this Tuesday to meet with the surgeon and the NP to see how things are going. She will get a chest x-ray and an ECG, but probably not an echo... that is just me assuming. I think it will be pretty straight forward. They will most likely tell us to come back in 3 or 6 months and go from there. And actually, we will still meet with the cardiologist in another few weeks still (yes, the cardiac surgeon and the cardiologist are two different people who need two different check-ups. Not entirely sure why). I am not worried about something getting missed here.
Again, we've just felt a great sense of love and support this last week. It's been such a gift having all of your support and prayers throughout this journey. Thank you for all the hugs, thoughts and food :)
Saturday, May 21, 2011
Home Girl: Day 4.
Friday, May 20, 2011
Impressive Girl! Day Three.
Amazing girl: Day Two
Wednesday, May 18, 2011
Tough Girl: Day One.
- Got IV and midazolam and was pretty good, to get her sleepy and happy in the day care room
- We were able to leave at 8:20.
- Went for breakfast pancakes
- Then to starbucks and then mec then to oakridge. Looked at watches.
- Back for 11:30. Realized we forgot our lunch. Dang.
- Waiting in ICU waiting room.
- Saw surgeon at 12:30. All good. Bit of a late start.
- Lots of muscle build up again, cut it all away and put a patch under it.
- Sealed up the 5mm hole between her atria, because she doesn't need that pressure release any more. She was a true double outlet right ventricle. They did use bovine pericardium for her patch. Yes, that's cow parts!
- Gradient was around 15 not 80 any more. Low enough down they aren't concerned.
- We'll see if her muscle building button is turned off or not: see if her body just wants to continue to keep making those same bundles... hopefully not.
- Off breathing tube in the OR, no need for blood.
- Saw piper around 2:30 and she was already moving around a little upset. They don't like her BP that high, around 130/70, so we need to keep her calm.
- She is cranky because her sedation is wearing off and she is uncomfy.
- Added some calming drugs/Adavan and doing better.
- Saying "all done" and asking for milk.
- Eyes open sometimes but mostly sleepy
- Music therapist came and sang some songs. Very sweet. Twinkle, twinkle little Piper.
- IV in both hands and foot. No central line in neck, arterial line in her arm that soon came out... oups!
- Lots of advances since December with a new surgeon, and lots of new procedures and making lots of progress.
- Doctor mentioned the possibilty of having to go through this again... always a possibility.
- Doctor said that toddlers do so well recovering, even more than babies.
- Feels really busy in here.
- Up every 10-30 mins with a fight.
- Piper works best with midazolam not so much the Presidex (the dex word). The nurses said that Piper is old school that way ;)
- She is trying to crawl out of bed. Got to really work to keep her settled. Tiring.
- Snuggled me for a little bit. So nice.
- Lost her arterial line needs a cuff, which is annoying as it pumps up every 15 minutes. Almost guaranteed to upset her.
- Downed some juice, asking for milk and trying to sign it. So sweet.
- She is quite warm. Back in bed a little better, not so hot.
- Gave her some chloral to help her get some real sleep to tonight, didn't really end up changing much. They ended up just upping her morphine for night time... not convinced she'll really sleep.
- Still likes her soother. A lot.
- Draining a lot out of her chest tube. Very cool, new system. Drainage is good, but there is a lot of it.
Otherwise, a pretty good day. Just long and tiring. We are really glad for all the great people in that hospital, but we are weary for the process ahead. If we end up going upstairs to recover tomorrow, we will be a little more on our own, so we'll have to do more of the hard work.
We are hoping that soon more lines will come out, and Piper will be a little more free and a little more comfy. We'll see how tomorrow :)
Thanks again for all your prayers and support today. We've really appreciated it all. Wow. I still can't really believe we're doing this all over again.
Tomorrow we hope to take out some lines like her catheter, one IV line, chest tubes, pacer wires and maybe something else. Then maybe she'll go upstairs and start eating a little more and being a little more normal. One day at a time!
Now we just need to rest so that we can work hard tomorrow. I'm feeling really tired, but I kinda just want to get back there and see how she's doing :) She might get some milk tonight, which will make her happy and miserable at the same time. Can't win.
Goodnight all!
Tuesday, May 17, 2011
The "Plan".
- wake up around 5:30 am, get everything in the car, eat a little bit and at the very last moment, put Piper in the car. She won't be able to eat or drink anything, so I'm hoping she stays sleepy or at least entertained by the car ride. (we are using Matt's work car, the Yaris, this week due to it's fuel efficiency and how well it fits into Vancouver parking stalls. Cha-ching!)
- Leave around 6am, get to the hospital around 7ish and sign her into the day-care clinic. Here she might get her blood pressure taken, temp and some other vitals. Good luck guys! This baby is gonna be hungry and pissed at you regardless. That is my prediction.
- At some point near the end, after she's in her little robe, with maybe a bit of stuff on her hand to numb it for the IV, she'll be given midazolam to calm her down and remove her fear and anxiety. It also kinda makes her look and sound pretty drunk. But this is a nice way for her to calm down and not remember the next little while. I'll have to remember to say a proper goodbye before she gets it, as last time I kinda missed out on that.
- Around 8am she will be getting handed off to a nurse or possibly the anaesthesiologist (A) to start some more serious sedation. The A we saw on Monday was awesome (pretty much a 40+ surfer dude, with a very groovy vibe) and said we might be able to go a little further with her, maybe able to be with her as her IV gets put in. We'll see. They usually want to keep parents out of the serious stuff and keep them in the waiting areas.
- Then, we'll leave our numbers on the white board and we'll head to breakfast at a pannakoek house. We'll try to relax, try to chat. Try to imagine we are just having a random breakfast in Vancouver with nothing else to do.
- Maybe then we'll go to MEC, as we've got a bit of a list of things to look at there, and now have some birthday money :)
- We'll try to head back for about 11am, as they said surgery should take approximately 4 hours, so we'd like to be there early. We might wait in the ICU waiting room, have a snack, read, or watch something (gotta remember to bring headphones!)
- Then we'll get to talk to the surgeon (can I tell you again how wonderful he is!) and get the run down on what happened in the OR.
- After this, we should be able to go and see her in the ICU. Apparently, she will come out of the OR extubated, which is a huge step! This is all due to a new drug they use that speeds recovery and helps enormously with post-op pain etc. I will get the name for you all, but at the moment all I can remember is "dexa-___-___-___-ene" or something like that. Anyways, she will not be on a ventilator, but will probably still have oxygen up her nose. She'll have only 1 chest tube, and still have the pacer wires that are there just in case she needs a "jump" (bad joke), which they've told us is quite unlikely. She'll have a central line in her neck, and an IV and blood-withdrawing line in her hand. No feeding tube down the nose/throat this time, as they are saying that with this new drug, she could most likely be eating the next morning. Say whaaaaat? Yeah, big things have happened in 14 months.
- Then we'll see what needs to happen, and how Piper is doing. We'll bring snacks and books and see what we want to do. We might step out for some lunch, or visit some of the people we know in the hospital. Tomorrow is a flexible day.
- After the most of the day (we like to meet the night nurse, so after 7:30pm), we'll see how Piper is doing, and whether or not we come home for a sleep or stay with my sister and bro-in-law at UBC. If Piper is looking like she might be quite alert, we might want to stay close, but if she seems like she might need to sleep things off, we might head home. I am leaning towards coming home as I know the next few days will be a little tiring, so it's always nice to be in your own bed. Not sure yet. We're packing our sleepover clothes, but we're leaving that up in the air.